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!
Friday, March 31, 2006
Thursday, March 23, 2006
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
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
Friday, March 17, 2006
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.
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.
Saturday, March 11, 2006
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.
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.
Monday, February 27, 2006
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...
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...
Friday, February 17, 2006
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!
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!
Thursday, February 9, 2006
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!
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!
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