Down time!

We are taking the website offline for awhile. We will be up and running again in about 4 or 5 months. Stay tuned and we will talk to everyone soon!

September 6, Daniel here

Pam and Chris had a loving and fun party for me and my six months pregnant wife, Wendy. Many of the people involved in Jesse's life right now were there. We ate Chris's spaghetti without silverware, got door prizes, played with rubber flies and spud guns, and had an all around good time. Tears were saved for the end of the evening.

Until about a month ago I had been having numerous dreams where Jess "wakes up" during the day AND HE IS IMMEDIATELY ON A CELL PHONE. As the evil stepfather of a 19 year old, it has become clear to me that each evening, around six, teenagers seem to rise like vampires to make a connection with one another. My son can sleep through loud music and 5 consecutive alarms, but when his phone rings he answers with a cheerful "What's up, dude?"

I've been working with troubled teens for fifteen years, and one of the big reasons I am leaving is because I am burnt out and no longer effective. It makes sense to me that Jesse's showing up in my dreams as a regular teenager would annoy me - But in the last dream, Jess picked up his head, slowly, and said "That was hard!" and smiled. We talked, and now I am so relieved that he has shown himself for who he is (my faith in teenagers is partially restored).

I believe our souls fly out of our bodies at night and cruise around the universe. They bump into, find, or are found by, other souls they have attractions with. I am SO HAPPY to have played with Jess at this level.

I don't know how to conclude this. I feel like there is so much ahead for Jess, and I am sad that I will not be with him to egg him on. I have grown to love the Matey family with more heart than I knew I had, a rich, rich emotion of connection.

September 2, 2006

I think I forgot to breathe during the last two weeks. It is has been very busy. Jess had his feeding tube changed with no problems except he got a little sick to his stomach horseback riding the same day. We think he may have eaten a little too soon. He is riding a new horse at the arena and we are very grateful to it's owner. We love Camo but he is getting pretty old to have a big guy like Jess riding him. We had Jess weighed and he weighs 158 lbs so he is staying at a good weight. I also met with his nutritionalist that helped me set up the formula that I mix for his feeding tube. She just added a few "brain" supplements and said through her research we were still doing the right mix. Jess does look very healthy. We should all be eating what he does!
Jess' Grandma Juliann is here from Cleveland and we are really enjoying her company! We are having a birthday party tonight for everyone because we don't get to celebrate our birthday parties together. Little Jahara will have fun with all the candles! Unfortunately, it is very smoky here because of some nearby forest fires so we haven't been able to go up north to some of our favorite mountain places. Jess gave her a big smile when she walked in which made her trip. We had a couple of cold nights and now as I look out the window the trees are already starting to turn. I sure hope we have a long warm fall before the snow falls again.
Jess is back in school. I had a meeting with all the team players that help Jess at school and they have a great program set up for him. He will attend a Psyche for Success class again and they set up a workstation in his old computer class so he can work on the computer programs we are experimenting with. We are losing Susan, the Occupational Therapist, but we are gaining a new OT, Catherine. Amanda is working full time for the school now but still gets to be with Jess when he is there. She now gets all the school benefits so it was a good move for her. We will miss her time with us. She has taken Jess to two football games though and she said he "lights up" when he gets there. Several people stopped by to say hello and gave him a hug and his basketball coaches stood right beside him and engaged him in their conversations. We are so lucky to live in such a giving community.
Daniel's last day was Thursday. It was a tough day for me. He has become an important part of our family and we will truly miss him. It is not easy to allow someone to come into your life, trust them with your car, your home, and more importantly your son who cannot tell you about his day. But, Daniel, I would trust with my life. He is a wonderful, funny, caring, gentle soul and we love him very much. We thank you for the last two years and wish you the very best always, Daniel! We are having a little going away party for him tomorrow so we all get one last hug!

Happy Anniversary Joey and Angela! It was a year yesterday since we shared your day. We love and miss you both!

August 20th, 2006

Monday of this week was very exciting. I received a call from John (Occupational Therapist). He was all excited because Jess had held his head up by himself for one minute and thirty seconds. It was such great news to start our week! Tracy (Speech Therapist) has been working with Jess on the switches (hi & see you later) and he is doing well moving his hand to hit them. Chris recorded the messages on the switches and it sounds so much like Jess. She is also working on the new computer program with him on a lap top computer. Chris is building Jess a new desk top table in his room so that he can fit under it in his wheelchair. We are so lucky to have such a talented builder in the family. Robby called to say he is finished cleaning up the viruses on Jess' computer but he wasn't able to save much of the old stuff that was on it. Jess will just have to start over again. We took a drive to Twin Falls yesterday (Jess, Chris, Mom, Dad and I) and ordered a flat screen television for Jess that will also serve as a computer monitor. It is 32 inches so we think he will be able to see it much better than a regular computer screen.
Jess also had a visit from Kelsey. He was in awe as usual when he looked at her. She stopped by to say goodbye as she is on her way to Arizona to college. We wish her the best always. School starts here on the 28th. Jess will be attending high school again. Most of his friends are all in college now but being in a school environment is good for Jess. He needs to be around kids close to his age. So, we know he will make some new friends.
Chris' mom from Cleveland is coming for a visit also that week. It's been a year since we spent time with her and we are all excited to see her. We are really bummed out that it will be Daniel's last week. It seems we always have "the good" and "the not so good". I don't like to report about "the not so good" but we all need to send some prayers for some special people. Joey's mother-in-law (Angela's mom, Janice) received news that her cancer is back so we need to send her and all the family in Minnesota some really good and positive energy! We are all praying for her wellness and that it will go back in remission! Also, Amanda received bad news that her stepdad was in a motorcycle accident on Wednesday so she left on Thursday to help her mom care for her dad. He's going to be ok but suffered an awful broken leg. And, Jess' best friend Curtie is going in for some surgery next week. Please say a few of those wonderful prayers for all of these special people that are part of Jess' life.

August 12, 2006

Jess, Amanda and I made our trip to Boise yesterday to visit the United Cerebral Palsy Lending Library. Jess was pretty sleepy by the time we got there. I think the 3 hour drive was pretty tiring. But, it was well worth the trip. We did get him in front of a computer with a program that would show him pictures going across the screen like a basketball or a piece of pizza and then all of a sudden it would stop and show a picture of the mouse. It would say "hit the mouse button" over and over until Jess hit a big red button that took the place of a regular mouse. He caught on and with a little coaxing hit the button for about 15 minutes. When he got too tired there was a guy sitting next to us who was so annoyed with the voice asking Jess to hit the mouse button over and over that he reached over and hit the button for him! It was pretty cute. We came home with two computer programs and 3 switches. We can program the switches to speak and he just has to touch them to activate the message. We thought since he is starting school we could program one to say "hi" and one to say "bye" so when friends say hi to Jess in the halls he can reply (we hope) by hitting the switch. The lady (Kathy) who helped us was very encouraging. She said that this was just the beginning stages of helping Jess to do a lot more communicating. She said once he realizes he has some control in his environment he will want more. So, now I am looking for a good computer workstation that Jess can fit under. He is so tall in his wheelchair that he won't fit under a regular desk. I also need to get him a larger screen since we still question how well he can see. It is so wonderful to have an organization that will lend you some different assistive technology devices to try before you buy because they are very expensive.

I can't believe school starts the end of this month. Summer has gone by so fast. Jess and I went for a long walk on the bike path today. I love being able to be outside with him. Chris made a quick trip to Dallas, TX and we miss him. I can do most everything for Jess by myself but I sure hope he doesn't grow much taller. We still keep hearing that prayers are being said for Jess across the country. We appreciate each and every one!!! God bless!

July 20, 2006

More good news!!! Jess' EEG showed "NO" seizure activity. Yippee! We are very happy to get that information back. It's like I said, "sometimes Jess just likes talking to the angels". I knew he was not having seizures. The neurologist also said that the "unorganized" wave lengths that showed on the EEG over a year ago are now "organized" (not sure what that means but I think it sounds very good).

Jess also had another visit from a good friend, Mikey, this week. Thanks for stopping by Mikey...it means a lot to all of us. And, Amanda was able to get Jess to blow on a whistle and actually make a sound. She also was able to get him to recognize colors on our communication board. She would give him two color choices and ask him to look at a specific color and he would look at the correct one. We are looking for more and more improvements...one day at a time! Thanks for checking in!

July 16, 2006

Lots of good things happened this week. We got the approval to purchase the turning mattress. They are actually going to pay for it. Yippee! It has been so wonderful to sleep in the bed next to Jess and know that every 30 minutes he will be repositioned. We were waking every hour worrying whether it was time to turn him. Now he is gently turned from side to side and we don't have pull on him and wake him during the night. Persistence pervails! We still take turns sleeping in his room because...we are afraid not to. Thank you to all who helped make it happen.
Jess had a visitor from his good friend, Kyle on Friday. They spent a lot of good times together while growing up. Kyle stayed about an hour and a half and just talked to Jess about old times. I wasn't home but Amanda said Jess was listening so intently and really seemed to enjoy his company. Thanks, Kyle!
I received a newsletter this week from a Parent Network organization for children with disabilities and there was an article in it titled "He Talks with His Eyes". I followed up with a call to the author who is from the University of Idaho's Assitive Technology Project. She was more than happy to talk to me about the possibilities of Jess being able to use some kind of device to communicate. We are going to set up a meeting in Boise to assess Jess' abilities. I have been praying for help in this area and guess what shows up! YOU JUST CAN'T GIVE UP ON WHAT YOU WANT!
It has taken me 2 years to get the courage to take Jess' computer to someone to have them get rid of all of the viruses. Joey said it would be best to wipe out his hard drive and start over. I wanted to save anything important or memorable on his computer when he is able to use it again so I have been afraid to do something that drastic. But, we may get to hook it up to some assistive technology so it became necessary to make the decision. Jess liked to visit a computer consulting business downtown and talk computers with the owner Robby so I took his computer to him. Anyway, before I did, Daniel had just returned home with Jess and was unloading him from the van. I looked into the van while Daniel was unhooking the wheelchair and told Jess I was going to take his computer into have the viruses removed but I needed his ok. I asked him to give me a thumbs up if that was ok with him. I watched his hand and arm start to wiggle and all of a sudden he raised his arm and put his thumb straight into the air. I started to cry! He wants to use his computer and I am determined to find a way for him to do it. He wants to communicate.
We took Jess in to have the EEG monitor hooked up. He had 16 wires glued to his head for 48 hours. I don't think he liked it much. We had to monitor any strange spaced out look or heavy breathing and then hit a button. We also had to write down what time he was doing activities. I think we only hit the button 6 times and some were questionable. We want to rule out any seizure activity because that seems to be the first thing any medical professional asks us. Jess is not on any medication and that is a very unusual occurrence for someone with a brain injury. Until Jess can tell us what type of reaction he is having to a drug we just don't want to subject him to the side effects. We also got good news from Jamie. Jahara was accepted to the Boise State University preschool. So, while Jamie attends college Jahara will be in one of the best preschools in Boise. It was truly a good week!

July 8, 2006

Jess had a great birthday. We were going to stay low key but our friends decided Jess and the family needed a little celebration. His best friend Curtie and his brother Carson came over with their parents. Paul made his awesome barbecued ribs and corn. His sister made him a pudding cake...he was able to even have a few bites. And little Jahara helped him blow out the candles and open his presents. Grandma & Grandpa were part of the gang too. He got cards from his family in Ohio and calls from his brother, his Aunt Jenn and his friend Dustin. All in all I think he really enjoyed his 19th birthday. The next day we took Jess to the 4th of July parade. When the firetrucks went by we reminisced when Jess and his friend Billy rode on them in the parade when they were just little guys. How time flys!
He had an alert and good week in therapies. Amanda gets such good responses when working with his eyes and when she asks him to respond. She started helping him draw on his big clip board again. He loved to draw so we hope one of these days we will see a wonderful painting again.
We had an appointment with a neurologist on Friday. She comes over from Boise a couple of times a week. We talked to her about ruling out the possiblity of Jess having seizures by hooking him up to a pocket EEG machine for 48 hours. It is very common for someone with a brain injury to have seizures but Amanda and I are sure he is not one of them. The times when Jess stares off into space and I say "Jess is talking to the angels again" could possibly be times when he is having a slight seizure. He will be hooked up next Wednesday and we will monitor different movements and eye gazes for the 48 hours. Seizures can inhibit him from progressing. Jess opened his hands, moved his foot, blinked two blinks for yes and tried to shrug his shoulder for her. After letting her know all we were doing for Jess I asked her if there was anything we were missing or if she had any suggestions for us. She smiled and said after reading through all the information I supplied her with she thinks she was the one who learned a lot from us.
Amanda stayed with Jess for a few hours today which allowed Chris and I to go for a wonderful hike. We both have realized how far we have drifted apart since Jess' accident and decided we needed to do a little work on spending some quality time together before we become another awful statistic. We have been receiving some interesting messages lately from total strangers so we decided we needed to take heed. We were warned in the beginning that not many relationships survive when they are faced with such a challenging tragedy in their lives. It's easy to take out all the fear and hurt out on each other. But, we realize that Jess needs us both and we need each other so letting go and spending some time together will only benefit us all. It was an incredibly beautiful day and the wild flowers were exquisite. Of course a hike with Chris is never just a "walk in the park"...it is always an adventure into the wild. We stopped on the way home and pulled out the side by side bike in the back of his truck and went for a little ride on the bike path. We rode to the park where the Dahli Lama put in the prayer wheel last year. It is a very spiritual place. We spent a few moments in silent and said a few prayers there after saying a few more on top of the mountain when we were hiking. We thanked God for the constant healing of Jess' brain. We thanked Him for a lot of things. We are trying to be ok with where we are right now. We just need to love each other and know that everything is in it's right place.

July 2, 2006

Good morning! Jess has been doing fine for the last two weeks. Amanda was gone for a week on her honeymoon. She returned this week and I know Jess was happy to see her. So were we. She always brings a smile and such a positive attitude. Daniel has been beaming...they are having a baby girl. He is staying until the end of August and then they are moving to the east coast. Both Amanda and Daniel have been having dreams of Jess walking and talking. What a good sign!
We were given a DVD to watch called The Secret. It is a wonderful reminder of "The Law of Attraction". I recommend it to everyone. Here is the link to view or buy the DVD http://www.whatisthesecret.tv/. It really helped Chris and I remember how powerful our thoughts and feelings are. Jess will walk and talk again. We need all of you to only think those thoughts with us. We are all pure energy and with positive thoughts and energy coming our way....Jess will heal his brain.
Tomorrow is Jess' 19th birthday. HAPPY BIRTHDAY, MY SON! How lucky we are to have him in our lives for 19 years. We decided to just hang out and celebrate his birthday here at home. Jamie and Jahara (who just turned 3 this week) will be home and Jess' friend Curtis with his mom and dad are coming over. If anyone would like to call and wish him a Happy Birthday we can put the phone to his ear. His eyes light up and his eyebrows raise and last night when his brother Joey was talking to him he looked like he even had tears in his eyes. We want to wish everyone a Happy 4th of July! We are blessed to live in such a wonderful country.

June 17th, 2006 - Two Years

Today is just another day! Yes, it is a reminder that we lost the Jess that we knew on this day two years ago and that June 17th, 2004 changed the lives of many of those who love Jess forever. But, it is also a reminder of how far we have all come and also a reminder of how many wonderful people that have touched our lives in those two years. We survived!
I guess most people from what I have been told would have given up by now and put someone like Jess, who has such a debilitating brain injury, in a nursing home and would only visit them once a year. We have compassion for those family members because we know how hard it is to see someone you love go through what Jess goes through on a daily basis. Then again, I remember a young man in the facility we went to for two days in Boise in the beginning who had a terrible brain injury and his mother visited him every single day and sat by his side for hours. So, we just do the best that we can with the situations we are given and take one day at a time.
Jess is well and healthy and loved. The prognosis is not so good as we are continually told, but I think that depends on whose eyes you are looking through. We are continuing our journey to do all we can and still await the time when we can see our Jess walk and talk and laugh and cry again. And, of course, I am still waiting for that hug.
With everything in our lives, there is the good and the bad. And, today is also the wedding day our precious friend and Jess' companion and caregiver, Amanda. An event and a day to celebrate....Congratulations Amanda and Steve! May your love for each other carry you through the challenges in life and we hope you have a very few of those and a wonderful and happy life together.We also wish all those dad's out there a....HAPPY FATHER's DAY!!!!

June 7, 2006

Last night was our first night in 8 days without our little granddaughter in the house. Boy, was she a bundle of energy and did she bring lots of smiles to this household. Just the little whisper "I love you Uncle Jess" was enough to steal your heart. Jamie is feeling better thank goodness and we are back into the routine.
Chris finished the tandem bike he has been working on for he and Jess. They had their first trial ride and it was amazing to see Jess and his dad sitting side by side on a bicycle. Jess can't assist in pedaling yet but he gets the feeling of riding a bike and has the opportunity to pedal when the urge arises. Just feeling the wind and the freedom has to be thrilling for Jess.
I was also able to get the rotating mattress on a trial basis for 30 days to see if it would accomplish what we hoped for Jess. As I have learned....if you don't ask the answer is always no. Anyway, it is so great! Jess & I actually slept from 11 until 4 a.m. last night without me having to jump up and roll him on his side every two hours. It is computerized to rock him left, center and right every hour. And, it is very quiet. Now, my next quest is to get insurance and Medicaid to believe that it is a medical necessity.
I have been looking at travel trailers too. It would be so much easier for us to travel and maybe even go camping again if we had a trailer all set up with the things Jess needs. When we stay in a motel it looks like we are moving in for the duration by the time we get all of our "stuff" in the room. So, I'm looking at those toy haulers. The whole back end drops down and makes a ramp. We could just roll Jess right in and have everything he needs. It is all about finding ways to make our lives easier.
Amanda is getting married this month so I had a little bridal shower for her on Monday. It was so fun and we wish her more than the best in her marriage. She has been working so hard with Jess trying to get him to make sounds. She works on his eyes, on communication, on range of motion and I truly believe they have become best friends. She knows Jess can read and she believes like all of us that it is just a matter of time. What good does it do us to believe any different? Thanks for checking on us!

May 28, 2006

It has been constantly busy since I last wrote. Chris and I drove to Boise yesterday while Amanda stayed with Jess. Jess' sister Jamie came down with spinal menangitis at that same time she was moving out of her current house into a new one. It is very painful and comes with a severe back and headache. With the help of some friends we were able to get all of her stuff moved into the nice new duplex that she is renting. She needed some rest so we brought home little Jahara, our almost three year old granddaughter, to stay with us for a few days. It was hard to leave Jamie but we needed to get home to Jess.
Last week when Amanda was taking Jess up to his therapy she noticed he seemed very restless and uncomfortable. When she got to the rehab center which is next to the hospital she noticed the muscle in his upper arm near his shoulder was concave and looking very weird so she had the therapists check it out along with an RN that happened to be there. They all decided he needed to have an exray. When the doctor in the ER first saw it he thought his arm was broken but fortunately the exray did not show a break. He said Jess just had a bad muscle spasm probably from having is elbows on a tray that slides onto the arm rests of his wheelchair. He could not move his arm off of the tray to relax his shoulders. We found out from the exray that he is developing osteoporosis from being immobile for so long. He gets plenty of calcium but we need to concentrate on more weight bearing exercises.
We are also trying a new therapy on Jess which involves quantum physics or biofeedback. Here is a website explaining what this type of therapy is http://www.qxci.biz/content/view/74/84/. It would take too much space to explain how it works. Yes, we are trying everything we can to help Jess heal.The seniors are out of school now and graduation is this Wednesday. We again hope everyone is very careful celebrating and we wish all of Jess' friends the best.

May 18, 2006

It was 23 months ago yesterday that Jess was hurt. It seems like a long time ago. Chris and I could never begin to tell you what those 23 months have been like for us and for our family. And, I only wish I knew what they have been like for Jess. Or, maybe I am glad I don't know.
Mother's Day was hard for me in one respect and wonderful in another. I have 3 beautiful kids and I have been so blessed to be their mother. Jess, my mom and I spent a few hours at Curtis' house on Mother's Day. Jess has spent a lot of time with Curtis and his parents Paul and Linda. We sat around and reminisced of all the fun they have had throughout the years. It was a beautiful day and Jess seemed to enjoy sitting on their deck in familiar territory with familiar voices. Chris was at home working on the tandem bike that he is trying to fix so he and Jess can ride down the bike path.

Joey and I have been looking at eye gaze computer programs. It is fascinating that Jess might actually be able to type a message on a computer with his eyes. Amanda feels very strongly that he can read. She shows him two cards with words written on them and asks him to look at a certain word on the card and he does. We wonder if he might be able to write us a message with his eyes. Would that be a miracle! It can be set up so he could look at pictures that would turn on his TV, stereo, lights, call us for help...who knows what all the options are. The bad news is the one we found is $15,000. But, we are still researching. If anyone has knowledge of the best one out there please let me know.

I am still trying to get a rotating mattress. It boggles my mind that we pay so much to make sure we have the insurance coverage we need in a crisis and yet it is so hard to get the things you need when you are in the crisis. No wonder so many people opt not to have insurance.

The sad news I have to report is that the wonderful guy, Daniel Hayes, who spends every Thursday helping and entertaining Jess is moving to the east coast. Can you believe he would leave our wonderful community to go back east? Just kidding...we wish the very best to him always and cannot thank him enough for all he has done for Jess and for Chris and I. He is the author of two great books, My Old Man and the Sea (he and his father sailed around Cape Horn) and On Whale Island (about he and his wife and son living on an island for a year). You must read them! He's not leaving until the end of July but it will come way too soon for us. We will miss Daniel, his smile and his sense of humor so much.

May 11, 2006

Happy Mother's Day!

With love to all....Jess, Pam & Chris

April 19, 2006

We have had a rough couple of weeks. Chris was down in bed with a virus for a couple of weeks. He tried to stay away from all of us and especially Jess so it wouldn't go through the family. He is feeling much better today so he took the night shift last night with Jess and is spending the day with him in therapies. Amanda is home sick too. I sure miss everyone when they can't help me with Jess. Luckily my shoulder is doing much better and I am so thankful for the ceiling lift.

Jess has been very quiet since we came home from Atlanta. He seems to be contemplating what is going on around him. I was worried that he was also coming down with something but so far he has not had a temperature or any signs of a cold. It is hard to know what is going on since he can't tell me. I can't tell you how much I wish he could communicate his wants and needs. It must be so frustrating for him. We are still only seeing minimal movement but he tries so hard. He has been making a lot of sounds especially during the night which is positive.

We had a school meeting and it was agreed that he should continue to attend as long as he can. It is a good way for him to interact socially with kids close to his age and the stimulation and energy of high school may trigger a response. I still struggle with a lack of speech therapists in our area. We will not have any speech therapy for the month of June. Of all the therapies, I feel that is the most important for Jess' recovery.

I know everyone wonders how long we can continue on this path. All I can say is, "as long as it takes". Our family and friends worry about our health and well being but we just don't see any other choice but to continue holding on to a positive outcome. There are no areas of our lives that haven't been affected by this accident to Jess. I try not to elaborate on the struggles we go through because it just doesn't help the situation. For today, we are managing and that is all that matters. Just keep sending those prayers...someone has to be listening!

April 9, 2006

We are home now from our journey to Atlanta. Of course all of the planning I did really didn't matter. I was so worried about flying with Jess that I had called all of the airports to see how they handled someone in a wheelchair. I had a map of the Chicago airport so I would know exactly where we were going and I had both the arrival and departure gates memorized. Well, we get to the Boise airport at 5:30 a.m. so we can be sure to be on time for our 7:20 flight. They take Jess through a different security check because of his wheelchair. They do a special blot scan on different parts of his chair. We could stand near him but not touch him. So, we get to the gate and they inform us the flight is delayed and we will not be able to go through Chicago. We would be rerouted through Denver. Oh boy...there goes my great organizing. Another lesson in just trusting that everything will work out as it should. Everyone was very kind and tried to help us as much as possible to get Jess in the seat on the plane (they even upgraded us to first class on the flight out of Boise). Jess had to wear his neck brace so his head would be stable. When we arrived in Denver we were late for our next flight. They failed to have the transfer wheelchair there for us so Chris just picked Jess up and carried him out to his wheelchair that we had gate checked. We had to run through the airport. It is quite amazing how people trust that when you have momentum going in a wheelchair you can just stop on a dime. Not! Darting in front of a moving wheelchair is not a good idea. At the next gate we had to transfer him to a very small wheelchair (with his 6'2 legs) to get him down the aisle. My preplanning of getting bulk head seats with extra leg room went out the window with my map of Chicago. They had to ask passengers to move so we could have the bulk head seats. So, being the "celebrities" that we are...everyone in the whole plane was watching us as we transferred Jess into his seat. The 737 I thought we had must have been lost. We were on a much smaller airplane with only two seats in the bulk head so Chris had to sit in back of the plane. He actually did quite well with that...and I am not really sure how he let that happen. He doesn’t like being very far from his son. Anyway, traveling in a wheelchair is a little more challenging than one might think. As I mentioned, there are a lot of caring people in this world though.

The reason for our trip is a bit hard to explain. It is one of those...”Ya just had to be there!” Here is the website with somewhat of an explanation of where and why we were in Atlanta - www.johnofgodinatlanta.com. Let's call it a spiritual retreat...not just for Jess but for us too. We had been directed on this path over a year ago from several different messages and we actually even had a wonderful person here that we had never met ask us if she could take a picture of Jess to John of God in Brazil. We agreed, of course. She returned with some herbs and a crystal from Brazil for Jess. We had thought about taking Jess to Brazil several times and were very excited to hear he was coming for the first time in 15 years to the US. It took 5 years to get him here. There were around 2,000 people there for the 3 day event. Many ministers from local churches came to support his work. We meditated, we rested, and we had spiritual healings, spiritual blessing, and spiritual procedures and slept for a whole day in our hotel room. That was very strange. We were told to rest as much as possible for 7 days and we have special instructions for 40 days. There is a lot on the internet about this man and what he does. It was similar to our experience with the Dahli Lama...very peaceful, very special and reassuring. When Jess passed by this respected man, he gently reached for Jess' hand and looked at me with a smile. He rolled his eyes back, spoke in Portuguese to the translator who in turn smiled at us and said, "He is going to get better".

It was not hard for us to want to be at this event and in his presence. We know there are those blessed with a gift of healing and with a direct connection to God. We could all do the same if we would just slow down long enough to acknowledge we have the same special gift. We are all one...connected to a higher power. We will continue to trust that God has a plan and we will keep following it.

P.S. Blue Shield has denied our request for a rotating mattress. They seem o think that it is not a medical necessity. Imagine that! I wonder if they would change their mind if they would lie in one spot for 24 hours and couldn’t move. It's okay, I don’t give up.

March 31st, 2006

It's been quite some time since I visited with you via this website. I thought you would enjoy hearing from the special people that surround Jess. We are very lucky to have them in our lives.

Jess is enjoying spring break right now. He has enjoyed a little rest. He is responding well to the new therapists and the old therapists have noticed changes which is reasuring. Our next endeavor is to get a rotating mattress so we do not have to move him every two hours during the night. My shoulder is getting better but the mattress will help all of us. I am going through the lengthy process again of getting the authorizations from insurances. Who knows when we will get an answer. I learned yesterday our taxes are going to be very complicated with Jess being over the age of 18. I guess I can chalk it all up to a good education that I am getting!

We are leaving today on another adventure until next Wednesday. This will be Jess' first time on an airplane so send some peaceful prayers for all of us. I will fill you in on the details when we get back.

Tomorrow is mom and dad's 68th Anniversary so we are wishing them a very Happy Anniversary!!! Happy April Fool's to everyone!

March 23, 2006

Dear Family & Friends:
Hello! It's Amanda! It is so wonderful having Jess home! I have missed him terribly while he was away in California. Although, it was very beneficial for Jess to get some much needed, intense therapy to aid in his progress. I worked daily at the high school with the special needs students, patiently awaiting Jess’s return.
Jess and I continue to spend time with each other throughout the week. The only day that I am not at his side is on Thursdays, in which case, Daniel takes Jess for the day. This is a good thing, for Jess needs a male companion once in a while to get away from all of us girls! Jess is only in one class this semester since his return from California, and this is psyche for success. I must admit, I truly love this class and the content that is taught, for I have learned a lot! And it is always a joy to see Jess react to his classmates, as well as the discussion of various aspects involving “personal power”. Pure and simple, the boy is wiggly during this class, it’s as if he is going to get right up and walk out of his chair. I am hoping and praying that this actually occurs one day!
There are many types of exercises that I work on with Jess that include: vision exercises, thermal stimulation (swabbing the inside of Jess’s mouth with a cold glycerin swab to get him to swallow more often, to strengthen his tongue). I also do range of motion, which involves exercise of the lower and upper extremities, in which I unload Jess onto a plinth, to let him stretch out a bit and get a break from his chair. And lastly, communication in which I instruct Jess to tell me yes or no with his eyes by blinking. I ask him a variety of questions that involve a direct answer and then I also show him photographs of his family, and familiar surroundings, I also include objects and animals. For the most part, Jess is 90% accurate with his communication, swallowing is stronger, eye gaze is stronger, and I have noticed more fluid movement in his extremities. We can thank the CNS Institute for this wonderful progress! I just pretend that I am a drill sergeant and I keep Jess motivated with these exercises through out the day at school. And he gets lots of kisses on the nose, along with hugs from me!! I am certain that by the end of the day, Jess is secretly saying ok please God get me away from this woman! These exercises that I am allowed to perform are within my scope of practice, I leave the harder stuff for the therapists at the hospital.
I suppose I better not get to lengthy, like I did the last time. I just wanted to give everyone an update on how Jess is doing and what I have observed since his return. He is stronger, he has made good progress, it is still slow, but extremely continuous!! And this is what we want. I will continue to do all that I can for this wonderful young man; I work very aggressively with the exercises, as his therapists do, in hopes that someday we will have a break-through. May God bless each and every one of you!Love Always, Amanda

March 17th, 2006

Daniel here again.
Jess was sleepy for most of today, and I wondered what that might mean. After a while I decided that it didn’t mean anything, and it was nice to see him going through what any of us might.
Then, I got thinking about Jess’s accident and all the lives it has changed; and honestly, no matter how positively you spin it, the whole thing just sucks. We create meaning - WE put labels on experiences, and sometimes I get so sick of having to be “enlightened.” Being pleasant, EVOLVING into a more perfect being - don’t you ever just want to scream about the hardship, the pettiness, the INJUSTICE of how things happen? Are you not tired of self censure? There’s a wonderful beast in there dying to be set free, your own Jekyll and Hyde.
There is no room for love until after the truth has been expressed in whatever nasty form it raises its ugly head. If what you really feel is not expressed, then all you do is spread the peanut butter of illusion over a wound that cannot heal.
Everyone is so hip on not reacting, but is not your initial reaction the most authentic, the one most needing to be said out loud? Reasoning it out or creating a meaning comes later.
What I’m saying here is, can you believe how horrible it is for all this to have happened to Jess? It’s outrageous and about a hundred other things like unbelievable, wrong, unfair, undeserved and cruel. I’m pissed!
And now that that is said, here is my spin, the meaning I have created: On the way to work this morning I totaled my truck (I can still hear the crunching). No one was hurt, and after calling the Police I immediately called Pam. “Don’t you try to move Jess by yourself - I will be there soon, I’m just a block away.” (Pam’s shoulder is hurt and moving Jess aggravates it - not to mention aggravating Chris, who so wants Pam to get better). As I put the cell phone in my pocket I was struck by what a privilege it is to be involved in something more important than myself - something which supersedes my own day to day drama; such a gift to be, if only for a little while, a servant.

March 11, 2006

Daniel here.I’ve been Jess’s Thursday caregiver since he got back from the hospital in September 2004. Pam asked me to write this update.
The best I see is how Jess continues to react more and more to both Pam and Chris; they can get a smile out of him, and its about time he started doing that! (My sister tells me that her first child was a lot of work, and after the first few months she had had enough. “But nature had plans, and just in time he smiled. So I kept him...”)
Jess has had trouble reconnecting with his facial muscles, and there is often a few to 20 second delay as he struggles to, I’m guessing here, either process what is being said, or connect what he hears and feels to his body. Either way (or a third way I don't see), when Chris “falls” on Jess to “wrastle” with him, Jess is now getting a wonderful expression of amazement and joy on his face (with Chris falling on me, I imagine I would be quick to respond as well). The look would be subtle to an outsider, but not to those who spend time with Jess. He is a handsome young man and frankly, it is a pleasure to be around him. I think all those who work with him would agree. In the business of care giving, that is not always the case. Sometimes I have to find the compassion, it's not just there as it is with Jess.
Physically Jess is much much stronger. Transferring from his wheelchair to a bed or his standing chair used to be like herding a big noodle. Now, somehow, Jess participates and it is fantastic! I was moving him just yesterday, and we “accidentally” stood up - that’s how easy it is now. I think it is mostly his stomach muscles that are helping, it is hard to say. Also, Jess no longer gets as dizzy when we sit him up - less disoriented.
There is also great improvement with Jess eyes. He now can track right and left, and even up and down. In fact, when you ASK him to, he can often do this without having to track a moving object. I really hope he is excited by all these things; that he can feel himself in his body, the thrill of being in more control of what it does. But the richest part of this whole experience, for me, has been being around Pam and Chris with their abundance of unconditional Love. I am an overeducated New York intellectual Jew heathen, but I swear I experience God all over their house; the place radiates love, and when I drive Jess to his various daily activities, tendrils of this love follow, envelope and even guide us. It’s a little like floating. Pam and Chris source this with a faith like no other.

February 27th, 2006

Jess has been doing well in therapies. Tracy, the speech therapist, asked him to wipe his mouth with a washcloth and he brought his hand right up to his face. She also asks him to kick an exercise ball off of his legs while sitting in the wheelchair and he does it. She puts it on his lap and he pushed it off with his hand when she asked him to. He also moved some cones sitting on a table with his hand. She is very patient and waits as long as it takes for him to respond. Amanda has been doing his tongue and eye exercises with him when she has time at school. We are noticing he looks around a lot more and we feel the glasses and exercises are a big help. Robbin, the PT at school, says she sees good changes in Jess' response time. Amanda said she heard Susan (OT) squeal in delight in one of their sessions at school so that was a good sign. And, they feel he is sitting stronger on the horse. He is lifting his head off the headrest and pillow too.

Chris and I have both been noticing a different look on his face and more emotion. We worry that if he does know how limited his body is moving he must be very frustrated. Especially knowing my Jess and how much he loved to be constantly moving in some sport, social activity, computer project or game or wiring & building something. He was never still. I guess we are still keeping him pretty busy.

I have been a little out of commission for the last week with a hurt shoulder so I haven't updated this site for 10 days. Sorry! A big thank you to Chris, Amanda, Daniel and my mom for taking my place while I rest a bad rotator cuff. I even broke down and had a cortisone shot in hopes it will keep me out of surgery. I guess I better hit the weight room in my spare time. What next, I ask, what next...

February 17th, 2006

Where did this week go? All I know is on Monday I loaded and unloaded Jess six times in and out of the van and Amanda did the same twice. Every day after that was about the same and it was a bit chilly with the temperature in the lower teens. Jess is going up to the rehab department of our hospital which is about 15 miles from our house 3 times a week. He has OT, PT and Speech with all new therapists. The speech therapist worked with Jess when we first came home and has not seen him for more than 6 months. She noticed a lot of changes...quicker responses, accuracy in the yes/no eye blinks, responding to commands, stronger tongue and much more alert. It was so good to hear such positive comments. The other therapists have not worked with someone like Jess but are very willing to learn the techniques outlined from the Centre of Neuro Skills in CA. He is also back in school three afternoons a week thankfully with Amanda by his side. He has OT, PT and speech twice a week at school. He is also attending his favorite class Psyche of Success where the kids interact with him and Ms. Patzer fills them full of wonderful knowledge. He rides Camo twice a week and the first day they were all amazed how well he handled being back on the horse. We are hoping to get rid of the rigid neck brace and try just using his soft collar, but it may be a few weeks before we give that a try. Jess also had acupuncture with our special acupuncurist "Joan" and we have yet to reschedule cranial sacral with Beth and Gordon.

Chris is taking Wednesdays off work so he can take Jess to his activities. They are going to get him in the pool next week. We are lucky to have Daniel entertain and escort him on Thursdays. I take the other days and try to find time to work and catch up on the home front. We are so grateful to all of the wonderful people that spend time with Jess. It is a big team effort. By the way...we do really miss Tami and John coming to our house for therapy. They became part of the family but the new rules don't allow us to have in home therapies anymore.

I also had many meetings in the last two weeks and all of them were very positive. Representatives from Idaho Medicaid came to visit with me twice and were very helpful in trying to find ways for me to access programs for Jess since we are in such a rural area. I have learned perseverance, patience and being an advocate for my son pays off...I just won't take no for an answer.

It's good to be home but there are a few things I miss in California. One is, of course, the weather, another is the support of other families that know what we are going through, the other is the convenience of just going to one clinic and knowing that they know a great deal about brain injuries and I also found my life was a bit simpler with just Jess to focus on. It was great not getting or paying any bills and only cleaning up for myself! But it sure was lonely not having family and friends close. So, as I have said all along...everything is temporary and things always change. That' a good thing....Jess is changing and things will continue to get better! Have a great weekend!

February 9th, 2006

I am sorry but I finally gave up on getting rid of the spam in the guestbook so I uninstalled it. Joey tried to fix it but the spammers are very clever. He is off on his honeymoon in Australia. I decided it was too time consuming deleting those awful messages every day so I got rid of it. Please email us at the address below with comments or messages to Jess. We love to hear from you and I will read all of them to Jess.

It has been a very busy week. I have met or talked to Amanda, Daniel, the school, the horse arena, the hospital therapy department and Medicaid. So far, everyone has been more than helpful and concerned about getting Jess the therapies and care he needs. He will have a busy schedule again which is what the neurologist, counselor, case manager and therapists recommended in California. The next few years are critical.

Chris and I are both exhausted. For some reason we just can't get our energy back. It is mentally and physically challenging to keep up with all that needs to be done. Not complaining...just being honest. Parents will do anything for their kids and we will continue to do the best we possibly can for Jess. We love him!

February 4, 2006

We are finally home. It took us 3 days and 2 nights. The pass we had to travel was better than expected but we took our time so Jess would not be in the wheelchair for too long each day. It is good to be home but a little overwhelming. I had everything organized in California and now I have to reorganize here. I have a meeting with Medicaid to see what therapies they will cover next week and we want to get Jess back in school and horseback riding. The last 62 days were interesting...Jess was actually only in therapy 41 days and the other 21 days we spent hanging out together. All and all it was a good decision to go to the Centre for Neuro Skills...not only for Jess but for our peace of mind.

The last few days there were full of events. The eye specialist had requested that we fly one of our occupational therapists out to train with her in regards to the exercises needed to correct Jess' vision. We are so grateful to Blake Walsh from the school district for offering to fly our OT, Susan Cooper, to Bakersfield to train with the eye doctor and follow Jess to each of his therapists at CNS. She had a chance to see what he has been doing for the last 2 months. She is an angel for coming and we can't thank both of them enough for being there for us again. We are still blessed in so many ways.

CNS gave Jess a little going away party the last day. Everyone had cake and sang him a song. We met so many wonderful professionals along with other families traveling our same path. Brain injury is a cruel event that happens to so many people and their families. The hardest part is trusting that there will eventually be a good outcome.
Well, I have a pile of paperwork, a lot of stuff to put away and Chris has a lot of snow to plow. We are all exhausted and glad to be home. We are still not quite sure where we are going or what we have accomplished while we were gone. But, we must remain in the mindset that it is all good.

January 28th, 2006

They finally hooked me up with a computer in the apartment. It will be nice for the next client staying here! We only have 3 more days until we leave. I can't wait to get home but I will miss the green grass, roses and walks in the sunshine. The weekends are tough. I only have Jess to talk to and he just looks at me with those big beautiful blue eyes like a puppy dog saying "it will be okay mom". I blink three times at him to say "I love you, Jess" and he blinks three times back. We seem to find a wonderful way to communicate with the animals we love that cannot speak our language and we can all find a special way to communicate with Jess. He needs that more than anything.

Jess is not a lot different from the way he was two months ago. He does swallow better, track with his eyes better and hold his head up better. Chris and I learned a few new things here. One thing we learned which we didn't really want to face is...there is not a quick fix for Jess. We found out that we are doing probably more for him than any place in the world could do. We verified we have a wonderful team of professionals at home that are doing just as well or better than any professionals we could find. We know it is important to be surrounded by people that love you, support you and have strong shoulders when you are in a traumatice situation like we have endured for the last year and 8 months. We still do not know where Jess will be in a month, a year or 10 years in his recovery. But, at least now I can stop feeling like we are missing a key piece of the puzzle. Only God and Jess can put that piece back. We will continue to get as much therapy as we can and as they have told us here...repetition, repetition, repetition. And, we need to continue to subject Jess to his life before the to help him remember who he was. He needs all the familiar faces and voices and places to stir up those neurons.

Crystal and I had a good cry last night...she and Samantha have been so good to us while we were here. It takes a special person to do what they do especially at their young age. When you need good loving people around you, they just seem to show up. We wish them the best in their lives. We thank everyone who has worked with us here. It is a great facility and all of the people here are very special and caring individuals to do what they do. There are many people in our same situation in this world. Why? I just don't know.

January 23rd, 2006

"Happy Birthday to you, Happy Birthday to you, Happy Birthday big brother Joey.....Happy Birthday to you!!"

I have the laptop hooked up at the clinic so I wanted to wish Joey a big Happy Birthday from your whole family!

Jess is working hard this last week at the clinic. They are video taping the therapies so we can continue doing the exercises at home. Due to the cost of staying here, lack of reimbursement from insurance, our travel and missing work, we decided to return home and work on the new things we have been taught. We will return to Bakersfield again. We will miss Crystal and Samantha...somehow all the s fall in love with our Jess. Imagine that!

I better run, I want to watch the OT do the new eye exercises with Jess' glasses. I patched one of his eyes and we went to see the basketball movie Glory Road. It was awesome. Jess stayed focused on the screen. He still loves the game. We also went to the "BIG" mall on Sunday. I thought it would be quiet but to my surprise I could not believe all the people and the mall was twice the size of our Boise mall. I forgot which door we came in so...we got our exercise.

January 20th, 2006

I don't have time to tell you so much. We have been very busy. I still don't have a computer. Jess is doing well. I found out from the eye specialist that Jess has been seeing double 80% of the time. Can you imagine? He also has a blank spot on the lower right field of vision. He now has prism glasses that help him control his eyes better and we patch one side every day for 3 hours. When they are patched it stops the double vision. The doctor thinks it will make a big difference in his progress. He cannot look down so the prism in the glass will help with bringing his eye gaze down. It will help him see his hands and want to use them more.

We have decided to return home at the first of February. We will have videos and written plans for our therapists at home and then we will return here periodically for reevaluation and new therapy plans. The therapists here have been wonderful and are so willing to help us in whatever way they can. We feel it was very beneficial to be here for the last two months.
I need to get Jess to speech therapy so please know we appreciate everyone keeping in touch. I will try to get back online again soon.

January 15th, 2006

Boy, did this week go fast. I enjoyed being home, spending time with mom and dad, worked everyday (a big thank you to Bill & Eltiena for being so understanding), caught up on bills, spent some quality time with my friends at dinner and a movie, took a bubble bath, slept more than three hours at a time, snowblowed the driveway a couple times, dealt with insurances and now my week is over. Whew! I am leaving for Boise to spend the night with my beautiful daughter and granddaughter and then on to Bakersfield Monday afternoon. I can't wait to be with Jess again and get a hug from my husband. We will both attend the team meeting on Tuesday. Chris will be home on Wednesday and back to work (another big thank you to Ned and Sun Valley Co. for letting him take this time off). We are very grateful.

I just spoke to Chris and Jess. They went to a college basketball game Friday night and are headed for a movie today. They also went to see King Kong last week. Chris said the week went "ok" in therapy. No big changes. Our expectations can make us quite depressed...we want our son back so bad. It's just not time I guess. We can't control the events that happen in our life and we can only be careful with the way we handle them. We have to stay positive, focus on the small improvements and know that we are doing all we can for Jess. His journey is his journey and each of us have our own journey and we all have to make the best of it. All I am sure of is, we will always be here for Jess. He will get better...I have no doubt.

January 10, 2006

I am back home for a few days and glad to be able to be on my computer. It is so hard to leave Jess but he is in good hands with his dad. I needed to go to work, check on mom and dad and catch up on the paperwork and Chris needed to see his son. I talked to Chris today and he said the appointment with the eye specialist went well. She has worked with people with brain injuries for many years. Chris said she felt Jess could definitely see and after extensive testing she said she thinks he has a blank spot in the lower right field of vision. She also thinks he may be seeing double at times especially when he is tired. She is going to instruct the therapist with exercises to help correct both problems. She did feel he needed glasses. He wore glasses before the so we ordered a pair. She told Chris that many times with head injuries there will be damage to the eyeballs from the impact but she did a test that showed Jess' eyes were not damaged and were healthy. Good news!

The speech therapists are using an electric stimulator on his vocal cords to help stimulate his voice and swallow. He will have a swallow evaluation next week. They continually work on his tongue to strengthen the muscles. We are also getting consistent yes/no answers with eye blinks. He does two blinks for yes and one for no. The OT has made a splint for his hand to help him control the movement in hopes that he can hit a yes/no button. I can't wait until Jess can have some choices and be able to tell us how he feels. The night before I left I was in his room watching him sleep. All of a sudden he smiled just like this picture and I started to cry. It made me feel so good to know that at least there are good, happy moments for him even he it's in his sleep.

I fly back on Monday and Chris and I will have a conference with the team that is working with Jess. We will decide if we will stay another month. We are taking it one month at a time. Chris will come home on Wednesday. We pass each other practically in the airport with a hug and a tear saying good bye. Both of us hoping the other will have some wonderful news of new recovery.

I have had a chance while I am home to get help with an appeal to our insurance company for coverage we feel he deserves and also to discuss options with Medicaid. It is all so complicated but we won't give up. Whatever it takes to get the help he needs. He is going to continue to get better...that's all we know. Thanks again for the prayers...we know there are many being said for Jess and our family and you don't know know how much it helps!!!

January 4, 2006

I have a few minutes to use this computer. It is awful not having a computer...what did we ever do without them? Jess is trying so hard in therapies. Some days I am so glad we are here and other days I wonder why we are here. I know Jess needs lots of therapy everyday and everyone here is so considerate and knows a lot about brain injury. We do new things each day with the goal of finding the key to unlock Jess' ability to move and communicate. He is trying to find a way to connect his brain to his body. And, it is very complicated when so many neurons have been disconnected. The hardest part is the not knowing what he can regain. We just keep the faith and send lots of good energy to everyone involved in his recovery.

Jess and I entertained ourselves for New Year's. We had three days off so we went to the movies twice. I feel like we are movie stars when we go out in public. Some people are afraid to acknowledge us and some give us the real stare down. We also ventured into a large mall. I took Jess to the video game arcade, which was one of his favorite places and also to a Foot Locker shoe store, another favorite. It was raining all weekend so everywhere we went we got soaked. Maneuvering around in a wheelchair is a different world. And boy do I cuss those who park in the handicapped zones. I think about trying to get him around at home with 4 feet of snow. Maybe we will stay until spring....

We have received a lot of cards and letters and I read every single one to Jess and we talk about our life and all our wonderful friends. It is strange how you can make the best of being in a strange city with new people. Where there is a will...there is a way. Chris will be here this weekend and we are sure glad. Love to Idaho and to everyone visiting this site. Pam, Chris & Jess