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!

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!