Jess had a good week in therapies. It was his last week of summer school and the therapists said he had the best sessions ever. Tami, the PT, who comes to our house was able to get Jess to open his right hand on command. It was so awesome because we have been worried about his right side and wondering why he couldn't move it as much as the left. We know Jess can move all of his body. It is just a matter of time for him to do it on his own. The brain is so complex.
We traveled to Twin Falls (60 miles one way) twice this week. Monday we had to have his neck brace adjusted again. Thursday he rode Camo very well so it was worth the trip. Camo has become quite attached to Jess. According to the girls at the arena Camo doesn't like to get too close to his rider's face but with Jess he moves right in and "kisses" Jess on the cheek. The relationship they are creating is very touching.
We also had an appointment yesterday with a rehab doctor in Twin. The neurologist that gave Jess the botox shot in his right leg a few weeks ago recommended we see her. She worked at the rehab center in Atlanta and he hoped she would have some suggestions for us. She was amazed at how well Jess looked after 13 months especially "with the severity of his injury". She said generally people in his condition have terrible contractures (where their arms, legs or hands are contracted and drawn in), or they are very thin and pale, or their muscles have deteriated, or they have extreme spastisity or skin breakdowns. Jess is free of all of those conditions and he still is not on any medication. She asked me questions about his therapies, his food, his sleeping habits, and then said, "I really can't suggest anything. You are doing a great job!" Of course, I wanted her to tell me when he was going to talk, eat and walk again and...of course...she couldn't. She just told me what all the other doctors have told us..."I have seen so many miracles, but we just don't know what the outcome will be." We talked about how so many of the military personnel injured in the war are coming back with traumatic brain injuries. We both hope it will help spur more research. She agreed with me that there isn't enough research being done for as many brain injuries as there are. But, I did hear on the news the President reversed some of his thoughts on stem cell research which is a good thing.I know it still all lies in God and Jess' hands. And, my job is just to learn to love more, help others more and forgive more...and that is a full time job!
Saturday, July 30, 2005
Saturday, July 23, 2005
July 23rd at 9:53 p.m.
Today is a big day in our area...His Holiness, The Dalai Lama is coming to Hailey on September 11th to give us a message of Compassion and Healing. They are issuing 10,000 free tickets to our community so everyone is in line as we speak to get their tickets. Of course, when I heard he was coming, I knew it was strictly for my Jess....to heal my Jess. No selfishness in that desire! So, for days I have been writing a letter to His Holiness in my mind. How do you write a letter to someone of such importance to ask him if he just might keep a very special young man in his prayers when he is here in this valley and so close physically. I don't know yet...but where there is a will there is a way....I will find the words...a mom never gives up. We won't take Jess to the event with 10,000 people in one venue it could be a bit overwhelming.
Jess is about the same. We have a surgery scheduled for August 11th to fix the scar from the trache and check his teeth before school starts in the Fall. Summer school ends at the end of July. He is still riding two times a week and has PT, OT, Acupuncture and Cranial Sacral (in the pool). I have appealed to Medicaid for more PT which they approved but for some strange reason they want to discontinue OT and I have yet to understand why they won't allow Speech Therapy in the home. Communication is so crucial. I think I will have to go to the Legislature to fight this one.
Jess is still moving his left side quite well when asked. We are confused why he doesn't have neck or trunk control yet but we do see a little better stability. He makes interesting sounds but can't quite come up with a word and he is eating soft foods very well but still has the feeding tube. We are standing him in the standing machine as much as possible. We still take turns sleeping in his room so we can turn him every 2-3 hours. And, we play music, tell him stories of his past, show him pictures of his life, massage his muscles, do range of motion, Chris wrestles with him on the floor, we move him alot, go outside for lunch, walk with him, sing to him, have him listen to tapes, put him in front of the computer, grandma and grandpa talk to him about fishing trips, card games and good times and we all pray several times a day. Most important of all...we give him as much love as we have and we wait.
"The reason why love and compassion bring the greatest happiness is simply that our nature cherishes them above all else. The need for love lies at the very foundation of human existence. It results from the profound interdependence we all share with one another. - His Holiness, the 14th Dalai Lama -Thank you so much to those of you who donated to the Sagebrush Arena. The money will be used for a very wonderful cause.
Jess is about the same. We have a surgery scheduled for August 11th to fix the scar from the trache and check his teeth before school starts in the Fall. Summer school ends at the end of July. He is still riding two times a week and has PT, OT, Acupuncture and Cranial Sacral (in the pool). I have appealed to Medicaid for more PT which they approved but for some strange reason they want to discontinue OT and I have yet to understand why they won't allow Speech Therapy in the home. Communication is so crucial. I think I will have to go to the Legislature to fight this one.
Jess is still moving his left side quite well when asked. We are confused why he doesn't have neck or trunk control yet but we do see a little better stability. He makes interesting sounds but can't quite come up with a word and he is eating soft foods very well but still has the feeding tube. We are standing him in the standing machine as much as possible. We still take turns sleeping in his room so we can turn him every 2-3 hours. And, we play music, tell him stories of his past, show him pictures of his life, massage his muscles, do range of motion, Chris wrestles with him on the floor, we move him alot, go outside for lunch, walk with him, sing to him, have him listen to tapes, put him in front of the computer, grandma and grandpa talk to him about fishing trips, card games and good times and we all pray several times a day. Most important of all...we give him as much love as we have and we wait.
"The reason why love and compassion bring the greatest happiness is simply that our nature cherishes them above all else. The need for love lies at the very foundation of human existence. It results from the profound interdependence we all share with one another. - His Holiness, the 14th Dalai Lama -Thank you so much to those of you who donated to the Sagebrush Arena. The money will be used for a very wonderful cause.
Wednesday, July 13, 2005
July 13th, 2005 at 8:30 a.m.
Well, we made it through all of the special occassions. Not much new news but I do have some good news. I have a wonderful person helping me now, along with Daniel. Her name is Amanda and she has worked as a Certified Nurse's Aide for 10 years. She has worked in a rehab center in Pocatello for the last 3 years with a lot of brain injuries. She is going to school to become an RN. As usual, I am so blessed to have the right people show up in my life. She applied for the job at the high school to replace Joey next year and I was able to get her to help me at home too. We thank and appreciate you, Amanda!
Chris also got the ceiling lift installed completely and it is so wonderful. We can get him in and out of the bathtub so much easier and I move him from the bed to wheelchair or from the wheelchair to the couch or floor all by myself. And, the nurse at my insurance company called and said they may be able to reimburse us for part of the cost. Never hurts to ask the question.
As far as any big changes go with Jess' condition...we still only see small ones and that has to be ok. Today, I don't want to elaborate on that much because... it hurts. At least I know there is always tomorrow.
I have been asked for the address to the Sagebrush Arena. It is P.O. Box 394, Sun Valley, Id 83353. They are having their annual fund raiser this Thursday. If you are looking for a wonderful place to donate and help many disabled children and adults it is a good one. And, you can do it in Jess' name. He will continue to ride twice a week for as long as it takes. And only because of the amazing volunteers that make it possible.
Chris also got the ceiling lift installed completely and it is so wonderful. We can get him in and out of the bathtub so much easier and I move him from the bed to wheelchair or from the wheelchair to the couch or floor all by myself. And, the nurse at my insurance company called and said they may be able to reimburse us for part of the cost. Never hurts to ask the question.
As far as any big changes go with Jess' condition...we still only see small ones and that has to be ok. Today, I don't want to elaborate on that much because... it hurts. At least I know there is always tomorrow.
I have been asked for the address to the Sagebrush Arena. It is P.O. Box 394, Sun Valley, Id 83353. They are having their annual fund raiser this Thursday. If you are looking for a wonderful place to donate and help many disabled children and adults it is a good one. And, you can do it in Jess' name. He will continue to ride twice a week for as long as it takes. And only because of the amazing volunteers that make it possible.
Sunday, July 3, 2005
"July 3, 1987"
"Happy Birthday to you, happy birthday to you, happy birthday dear Jessie, happy birthday to you!"
Today is Jess' 18th birthday. He came into this world at 2:04 a.m. on Friday morning and weighed 8 lbs. 10 oz. He became "the light of my life"...
Last week was very busy as usual. I took Jess to a neurologist in Twin Falls on Monday to have botox shots in his right leg. It weakens the muscles that are overpowering the weak ones. I, of course, tried to get all the right answers from him with no luck. He just kept answering, "We just don't know". He is not in a persistent vegetative state and he is not in a coma....he is just healing. He checked his eyes and said, "Yes, he can see but we can't tell how well". He knows he can hear. He was impressed that his muscles were so strong but not rigid. Jess even opened his hand when asked, followed the doctor, and raised his eyebrows. He said there is no proof medications would help and that he is getting as good of therapies at home that he would get in a rehab hospital. We talked about stem cell and he said there is a lot of research but it will be a few years. And he concluded, "If your going to get a brain injury, it's best to do it before your 18." So, we still just get to wait and see.
Tuesday, Grandma Juliann flew back to Cleveland and we miss her very much. Everyone comes and goes and each time it is hard to see them leave. The fresh optimism and energy is so welcomed. Sometimes I wish I could leave and come back all renewed and full of new energy and then witness Jess all better. Jess and I have been taking good care of each other...that was a promise we made to each other many times. He always told me, "don't worry mom...I'll always take care of you."
The rest of the week we did our usual therapies, school, swimming and horseback riding. Chris is working at the arena, helping them permanently install air conditioners for the arena. They have an incredible operation which includes many volunteers and helps over 300 people at no charge. If anyone is looking to donate to a great cause, please consider the Sagebrush Arena. They have their annual fundraiser this month. We are so thankful for all of the volunteers.
I also took Jess to a plastic surgeon to see if he could fix the scar on Jess' neck from the trachea. Hopefully, the scar tissue isn't inhibiting his swallow. He said it is a simple procedure but as a precaution he would want to do it in the hospital. Instead of the big indentation he has now, he will just have a small straight line scar. We also talked about stem cell and he feels strongly about it so I have been trying to do some research by checking the web for clinical trials. If anyone out there has any info, please share it with me.
Today we are having a little party for Jess. You only turn 18 once and for me...I want to celebrate the 18 wonderful years I have been able to spend with "the light of my life". Happy Birthday, Jess! Thank you for being such a magnificent part of my life. We will continue to take care of each other... for as long as it takes.
Have a Happy 4th of July!
Today is Jess' 18th birthday. He came into this world at 2:04 a.m. on Friday morning and weighed 8 lbs. 10 oz. He became "the light of my life"...
Last week was very busy as usual. I took Jess to a neurologist in Twin Falls on Monday to have botox shots in his right leg. It weakens the muscles that are overpowering the weak ones. I, of course, tried to get all the right answers from him with no luck. He just kept answering, "We just don't know". He is not in a persistent vegetative state and he is not in a coma....he is just healing. He checked his eyes and said, "Yes, he can see but we can't tell how well". He knows he can hear. He was impressed that his muscles were so strong but not rigid. Jess even opened his hand when asked, followed the doctor, and raised his eyebrows. He said there is no proof medications would help and that he is getting as good of therapies at home that he would get in a rehab hospital. We talked about stem cell and he said there is a lot of research but it will be a few years. And he concluded, "If your going to get a brain injury, it's best to do it before your 18." So, we still just get to wait and see.
Tuesday, Grandma Juliann flew back to Cleveland and we miss her very much. Everyone comes and goes and each time it is hard to see them leave. The fresh optimism and energy is so welcomed. Sometimes I wish I could leave and come back all renewed and full of new energy and then witness Jess all better. Jess and I have been taking good care of each other...that was a promise we made to each other many times. He always told me, "don't worry mom...I'll always take care of you."
The rest of the week we did our usual therapies, school, swimming and horseback riding. Chris is working at the arena, helping them permanently install air conditioners for the arena. They have an incredible operation which includes many volunteers and helps over 300 people at no charge. If anyone is looking to donate to a great cause, please consider the Sagebrush Arena. They have their annual fundraiser this month. We are so thankful for all of the volunteers.
I also took Jess to a plastic surgeon to see if he could fix the scar on Jess' neck from the trachea. Hopefully, the scar tissue isn't inhibiting his swallow. He said it is a simple procedure but as a precaution he would want to do it in the hospital. Instead of the big indentation he has now, he will just have a small straight line scar. We also talked about stem cell and he feels strongly about it so I have been trying to do some research by checking the web for clinical trials. If anyone out there has any info, please share it with me.
Today we are having a little party for Jess. You only turn 18 once and for me...I want to celebrate the 18 wonderful years I have been able to spend with "the light of my life". Happy Birthday, Jess! Thank you for being such a magnificent part of my life. We will continue to take care of each other... for as long as it takes.
Have a Happy 4th of July!
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