Not much new on the home front! We did get Jess in the new sling today and it was very encouraging. We didn't get the one we thought we ordered that was in the picture but we decided to try this one anyway. We didn't put too much weight on Jess' feet as he hung upright from the ceiling lift. We encouraged him to try to move his legs. He tried so hard to move them and with a lot of work initiated a little forward movement. It was great to see that he could send those messages to his legs. I plan on getting him in it at least every other day, if not every day. It is quite an endeavor getting him into it but I think it will be very worthwhile. Who knows...he may teach me to dance yet!
Jess turns 21 on July 3rd. I can't believe how fast the years have gone. If you are in the neighborhood, please stop by and wish him a Happy Birthday!
Saturday, June 28, 2008
Tuesday, June 17, 2008
Four Years Today
I have been reading my past posts from June 2004 and reflecting on the last 4 years today. Jess and I are home alone and he has been pretty meloncholy. It has been 4 years today since his accident. I just look at June 17th as the birth of my new son.
We have been working on two new things with Jess and he is doing quite well I must say. One is turning on his bedroom light when we pass by the light switch. At first he would just move his hand a little when I asked and then I would help him reach the switch to flick it on. Last night he moved his whole arm with gusto and tried to reach it by himself. It was an event for celebration!
The other new move that Chris has been working on for awhile is to gently kick his bedroom door open when he wheels him through the doorway. The door is usually not completely open. Again he usually would only make small movements with his foot but the other night he gave it a good kick and moved the door all the way open.
I emailed Dr. Jill Bolte Taylor regarding the book she wrote "My Stroke of Insight". It took her 8 years to recover from a stroke. Anyway, this was her comment:
Dear Pam, thank you for this very kind message. I think you will find my book of tremendous value in helping Jess. Never give up and pay attention to the very little things and remember to celebrate with gratitude every day for what you have. I wish you all the very best. JIll
We have been working on two new things with Jess and he is doing quite well I must say. One is turning on his bedroom light when we pass by the light switch. At first he would just move his hand a little when I asked and then I would help him reach the switch to flick it on. Last night he moved his whole arm with gusto and tried to reach it by himself. It was an event for celebration!
The other new move that Chris has been working on for awhile is to gently kick his bedroom door open when he wheels him through the doorway. The door is usually not completely open. Again he usually would only make small movements with his foot but the other night he gave it a good kick and moved the door all the way open.
I emailed Dr. Jill Bolte Taylor regarding the book she wrote "My Stroke of Insight". It took her 8 years to recover from a stroke. Anyway, this was her comment:
Dear Pam, thank you for this very kind message. I think you will find my book of tremendous value in helping Jess. Never give up and pay attention to the very little things and remember to celebrate with gratitude every day for what you have. I wish you all the very best. JIll
The book is great. It has given me insight on what Jess is going through and how I can help him. I will never give up! Enjoy your day!
Saturday, June 7, 2008
Postponed
I heard from one of the doctors at the Cleveland Clinic last week. She said they have postponed accepting Jess into their study. It does not mean he won't be considered again in the future, it just means they want a little more experience before they perform the complex procedure on him. We were disappointed but now I am trusting that everything is in right devine order and that there is a reason for the delay. We have learned it is better to go with the flow and are trying to look at the positive instead of finding another reason to be more depressed and sad. I always said I didn't know if I wanted him to be one of the first candidates. I guess someone was listening.
We are looking for another CNA or LPN to take Brandie's place in July. They need to be licensed, able to administer medicine, have good qualifications, not be afraid of seizures and comfortable with Jess' disabilites. Not asking for much, are we!
Summer is taking it's time getting here. We are anxious to get Jess outside more. He is healthy and hasn't had a seizure for awhile. We changed his medication so hopefully they will not come back. I just ordered a walking harness sling for him. We will try hooking him up to the ceiling lift in the sling, put weight on his legs and move him as though he is walking. We'll see!
We are looking for another CNA or LPN to take Brandie's place in July. They need to be licensed, able to administer medicine, have good qualifications, not be afraid of seizures and comfortable with Jess' disabilites. Not asking for much, are we!
Summer is taking it's time getting here. We are anxious to get Jess outside more. He is healthy and hasn't had a seizure for awhile. We changed his medication so hopefully they will not come back. I just ordered a walking harness sling for him. We will try hooking him up to the ceiling lift in the sling, put weight on his legs and move him as though he is walking. We'll see!
Tuesday, June 3, 2008
Graduation
We made it through the emotional last week of school. We did not go to the graduation exercises. It would have been too emotional for us and too stimulating (seizures) for Jess. Unfortunately, there was a tragic accident as a result of the parties held in honor of graduation. Two teenage girls were killed in a rollover coming back from a canyon party. I worry so much at this time every year. No matter how you try to enforce safety to kids...they think they are invincible. Our thoughts and prayers go out to the families.
The girls were in a 1993 Jeep Cherokee which is one of the worst vehicles for rolling and roof strength. I bring this up because tomorrow is the Senate hearing on roof crush in rollovers. Please send your good energy and letters to senators if compelled to change the law on making our vehicles roofs stronger. I was not able to be there but we will be in spirit.
We are still in limbo as far as the Cleveland Clinic goes. We are just trying to go on with life and not put too much emphasis on the possibility. The anxiety is too much to handle.
Jess has been very alert lately. I was able to get him to grab a large metal spoon out of a metal mixing bowl yesterday. His hand does not work the way he wants it to but he was determined to figure out how he could make it grab the spoon. He also was able to put it back in the bowl and drop it. I think he liked the noise it made. I can't tell you how excited I was to witness his ability to think about what he wanted to do and make it happen. I am reading a book about the plasticity of the brain and how we can retrain our brains. It is giving me the reassurance that we must keep trying new things with Jess and keep letting him know that he can get better and that he is doing an awesome job.
Chris and I reflect on the fact that it has almost been 4 years since the accident. A very long 4 years. We have had many new friends and many wonderful people come into our lives and support us through those years and we thank them all. Here is a letter I submitted to the newspapers relaying our gratitude but I don't think they are going to print it so hopefully it will touch some of those who it pertains too. We love you all!
The girls were in a 1993 Jeep Cherokee which is one of the worst vehicles for rolling and roof strength. I bring this up because tomorrow is the Senate hearing on roof crush in rollovers. Please send your good energy and letters to senators if compelled to change the law on making our vehicles roofs stronger. I was not able to be there but we will be in spirit.
We are still in limbo as far as the Cleveland Clinic goes. We are just trying to go on with life and not put too much emphasis on the possibility. The anxiety is too much to handle.
Jess has been very alert lately. I was able to get him to grab a large metal spoon out of a metal mixing bowl yesterday. His hand does not work the way he wants it to but he was determined to figure out how he could make it grab the spoon. He also was able to put it back in the bowl and drop it. I think he liked the noise it made. I can't tell you how excited I was to witness his ability to think about what he wanted to do and make it happen. I am reading a book about the plasticity of the brain and how we can retrain our brains. It is giving me the reassurance that we must keep trying new things with Jess and keep letting him know that he can get better and that he is doing an awesome job.
Chris and I reflect on the fact that it has almost been 4 years since the accident. A very long 4 years. We have had many new friends and many wonderful people come into our lives and support us through those years and we thank them all. Here is a letter I submitted to the newspapers relaying our gratitude but I don't think they are going to print it so hopefully it will touch some of those who it pertains too. We love you all!
May 27, 2008
To: An Amazing Community
We are amazed at the support, generosity and compassion we gratefully receive from this valley. We want to thank everyone who participated in two fundraisers recently held for our son, Jess Matey.
The Quest Class at the Wood River High school had a car wash provided by the Valley Car Wash. The students graciously donated the proceeds to help Jess with medical expenses and travel incurred on a recent trip to the Cleveland Clinic. He is being evaluated for a specialized deep brain stimulation procedure that may help him walk and talk again. The kids were amazing and spent two days at the event. They also helped to get 400 petitions signed for the June 4th Senate hearing organized by People Safe in Rollovers in Washington D.C. The goal is to get the auto industry to strength the roofs in our vehicles.
Mauro Zavala organized a dance at the Next Stage Theater for his senior project. He also donated the proceeds to Jess. We are so grateful to Mauro and all of the students who supported the dance and reached out to help a fellow student.
This is Jess’ last year attending the W.R. high school. We thank all of the students, staff, administration and therapists that welcomed and helped Jess at school every day. We especially thank Brandie Hopwood, the para pro and caregiver who drives 4 days a week from Mackay to be by his side and take such awesome care of him.
Jess has been riding at the Sagebrush arena for the last 4 years since his accident. We thank the outstanding staff and wonderful, important volunteers assisting him twice a week.
This community is like no other. We could not survive this difficult journey without so many people. The wonderful friends, therapists, alternative therapists, EMT’s, E.R. and hospital staff and strangers that have come to our rescue are appreciated beyond our words. We truly are blessed and forever grateful to each and every one of you.
Pam, Chris & Jess Matey
To: An Amazing Community
We are amazed at the support, generosity and compassion we gratefully receive from this valley. We want to thank everyone who participated in two fundraisers recently held for our son, Jess Matey.
The Quest Class at the Wood River High school had a car wash provided by the Valley Car Wash. The students graciously donated the proceeds to help Jess with medical expenses and travel incurred on a recent trip to the Cleveland Clinic. He is being evaluated for a specialized deep brain stimulation procedure that may help him walk and talk again. The kids were amazing and spent two days at the event. They also helped to get 400 petitions signed for the June 4th Senate hearing organized by People Safe in Rollovers in Washington D.C. The goal is to get the auto industry to strength the roofs in our vehicles.
Mauro Zavala organized a dance at the Next Stage Theater for his senior project. He also donated the proceeds to Jess. We are so grateful to Mauro and all of the students who supported the dance and reached out to help a fellow student.
This is Jess’ last year attending the W.R. high school. We thank all of the students, staff, administration and therapists that welcomed and helped Jess at school every day. We especially thank Brandie Hopwood, the para pro and caregiver who drives 4 days a week from Mackay to be by his side and take such awesome care of him.
Jess has been riding at the Sagebrush arena for the last 4 years since his accident. We thank the outstanding staff and wonderful, important volunteers assisting him twice a week.
This community is like no other. We could not survive this difficult journey without so many people. The wonderful friends, therapists, alternative therapists, EMT’s, E.R. and hospital staff and strangers that have come to our rescue are appreciated beyond our words. We truly are blessed and forever grateful to each and every one of you.
Pam, Chris & Jess Matey
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