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!!!!
Saturday, June 17, 2006
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.
Thursday, May 18, 2006
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.
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.
Thursday, May 11, 2006
Wednesday, April 19, 2006
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!
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!
Sunday, April 9, 2006
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.
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.
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