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!
Sunday, June 17, 2007
Thursday, June 14, 2007
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!
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!
Saturday, May 26, 2007
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
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
Thursday, May 24, 2007
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!
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!
Saturday, September 9, 2006
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!
Wednesday, September 6, 2006
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.
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.
Saturday, September 2, 2006
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!
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!
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