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!
Thursday, July 20, 2006
Sunday, July 16, 2006
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!
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!
Saturday, July 8, 2006
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.
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.
Sunday, July 2, 2006
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.
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.
Saturday, June 17, 2006
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!!!!
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!!!!
Wednesday, June 7, 2006
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!
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!
Sunday, May 28, 2006
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.
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.
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