[PaulaMommy]

All this time I have been wrong about Bryson's diagnosis. I kept hearing C6-7 and I guess thats what I remembered....thus why I was frustrated b/c the medical staff said he will never breathe again. Anyway, he did have an injury at 6-7, but also had a contusion at C1. I was really sad when Kimla told me this the other night. The doctors recently told her that the swelling has gone down and to accept that this is it. Kimla still wants to take him to Shriners, but otherwise understands. His other grandparents, on the other hand, still believe he's going to "get it all back." My heart is sad for all of them.

Anyway, since they fixed his trach, he tolerated the LTV, so they moved him up to rehab. He is kinda scared in the new room, esp. b/c he isnt in a ward setting, but in a private room. This is hard for Kimla b/c she wants to be with him 24/7...otherwise he might be in there alone and upset. All the new nurses/staff have to learn to care for him. Kimla is becoming an expert. He has "no reserve, " as they call it-so trach care, baths, etc. has to be done very diligently or he desats.

Thats about it....

[Theresar360]

PaulaMommy, on Apr 12 2008, 01:14 PM, said:

All this time I have been wrong about Bryson's diagnosis. I kept hearing C6-7 and I guess thats what I remembered....thus why I was frustrated b/c the medical staff said he will never breathe again. Anyway, he did have an injury at 6-7, but also had a contusion at C1. I was really sad when Kimla told me this the other night. The doctors recently told her that the swelling has gone down and to accept that this is it. Kimla still wants to take him to Shriners, but otherwise understands. His other grandparents, on the other hand, still believe he's going to "get it all back." My heart is sad for all of them.

Anyway, since they fixed his trach, he tolerated the LTV, so they moved him up to rehab. He is kinda scared in the new room, esp. b/c he isnt in a ward setting, but in a private room. This is hard for Kimla b/c she wants to be with him 24/7...otherwise he might be in there alone and upset. All the new nurses/staff have to learn to care for him. Kimla is becoming an expert. He has "no reserve, " as they call it-so trach care, baths, etc. has to be done very diligently or he desats.

Thats about it....

Paula, I am sorry to hear about Bryson. One thing I don't understand is when they say that he has a contusion at C-1 isn't a contusion a bruise? Bruises heal so if it heals why would that prevent him from breathing on his own? I get so confused about all the terminology that is used and being told one thing then something else.
Victoria is still on her vent too. We don't know what is going to happen with her. They keep saying they are sending physical, respiratory and speech therapists to the home but I have yet to see any. I think the sooner we start these things the better. We need to get her to her fullest potential and not let her just lay there. It is really frustrating for me as her "gramma" to see this. Maybe I am being impatient but she will be 2 April 20th and she still is barely talking. They hardly ever give her a "leak" so she can make noises because the nurse tells me she is having trouble tolerating it. Doesn't make sense to me. I feel bad for her alot. I was watching her the other day as she was watching her 8 year old sister and 10 year old aunt play around. The poor little baby started to cry! I asked my daughter if she does that alot when around other children and she told me she does. She thinks it is because she wants to go play to. How heartbreaking! The girls try to include her in whatever play they can but it is hard because everyone is constantly telling them to be careful of her. I tell them to read books and put little baby dolls in her hand and hold them for her. This whole situation is still so unbelievable.
I have to go take my daughter to school. Give Bryson a hug and a kiss from us. I pray for him daily......Theresa

[DLV]

I have been following Bryson's and Victoria's stories. They are both heart wrenching. Spinal cord injuries are devastating at any age. However, when they happen to such young innocent children it is hard to put the anguish in words.

As hard as it can be at times, please stay positive. Most experts agree that it takes one year for all spinal swelling to subside. Lots of people see recovery after one year.

It is a great idea for Bryson's grandmother to take him to Shriners. There is definately a difference in hospitals that specialize in spinal cord injuries versus places that will "accept" a patient with a spinal cord injury. Bryon's grandmother must be an extremely strong person. I would guess she has not even had the time to mourn the passing of her own daugher. It sounds like she also has a greart support system around her, of which you, Paulasmommy are part of.

Theresa, your words and actions remind me of my own mom's when my son was injured. She was always there for me, trying to get me to let her take some of the burden off myself. In some ways I think it was harder for her as she was worried about both me and my son. I will always remember and appreciate that my mom dropped everything and stood with me during those horrible days. Theresa, I am sure your daughter feels the same.

Continuing with therapy is extremely important. Most who have had significant recovery contribute it to staying in therapy. You must make and keep the body ready for recovery, whether it is the body doing it on its own or when science has found a cure.

I will continue to pray for Bryson and Victoria.

[PaulaMommy]

Thank You for your kind words DLV and I'm so sorry about your son's injury.

Theresa-oh it just makes me so sad to think of Victoria crying b/c she cant play with her sister/aunt. I dont think that it has occured to Bryson since he isnt home yet. Though he was def. scared and upset when they moved him from his old room to his rehab room, which is private. ANyway, hopefully Victoria will tolerate the "leak" soon and able to talk. Bryson has started talking alot....so I'm sure she wont be far behind once she can tolerate it.

Right now Kimla is upset/scared b/c she needs to find a secondary person to be "checked off" at the hospital in order for Bryson to get discharged. B/c of circumstances, there isnt anyone available who she can work with. I cant do it b;c I love 3 hours away from them. Again, the hospital he is at is here where I live, but they actually live in Norhtwest Arkansas. Kimla's son (Bryson's father) will not get out of prison until next May....but he is doing all the right things to get out as early as possible. His crime was non-violent, by the way. He plans on taking care of his babies once he is out.

Anyway, I know alot of people follow Bryson (and Victoria's) story, so I'll try to continue to post. They need all the prayers and positive thoughts they can get.

[EmHope]

First of all, I will be keeping both of your babies in my prayers! I am not a mother yet and can't begin to know your heartbreak!!!!!!!!!! I had a cervical injury in 2001 and am now in graduate school for speech-language pathology. I see many trachs and vents. First off don't worry too much about Victoria's speech. She is still very young and has been through so much. Once she can tolorate caping the vent words will come...and no worries if she is behind others her age...she will catch up. Childrens brains are like a sponges. Children learn language from those arund them. Talk to her a lot, read stories with pictures and comment on the pictures, and include her in as much play with peers and adults. Turn all care activities in to a game or explain the steps you are following when doing some of her car (bath, brush hair, putting lotion on, changing a cath. Any speech that she can listen to especialy comments in play and story book reading, and sequential tasks will help her language. Even getting a bed bath could be turned into pla with washcloths/bath toys. I know she can't minipulate them but thats okay. The other peers or adults can play pretend with a rubber duck by making the ducky give her cheek kisses, hide from a wolf in her blankies. You could have 2 duckies and name one Victoria and have them play on her tummy, under the covers, pillow, etc. Sing songs to Victoria. Twinkle-twinkle, barney, The Farmer in the Dell. Many kids learn through music.

Anyway, I posted the below info last week...but in the wrong forum. The below research is not something your kids could be apart of right now, because they are so young yet. But this study would be worth while keeping track of, because in a couple years it might be a treatment your little ones could benifit from.

Also, PLEASE do not settle for the function you see them have right now and think that is all!!!!!!!!! It used to be that doctors said the magic numbers for gaining as much function was between 12-18months. Resent research has found that statement false!!!!!!!! People can gain sensory, movement, function throughout their life after spinal cord injury as long as they keep their bodies health and in good shape. You're little guys are still in the rough times soon after injury were their bodies are just tryig to regulate. When they are healthier and stronger in a year or two thats when they should target regrowth, strength, and rehab. Plus they are so young which is to their advantage because there could be more chance of nerve rerouting in the cord after swelling and secondary damage is gone.

SO PLEASE DON"T LOOSE THE HOPE FOR YOUR LITTLE ONES ANYTHING IS POSIBLE!!!!!!!

Below is info regarding the study at The Miami Project:

It is such a great opportunity for little ones soon after injury because, 1st more chance of recovery since they are still little and still growing, and 2nd if they get in soon after injury there is less secondary SCI damage to surrounding areas (penumbra-area will be much less!)

My prayers are with you!
Emily

-----------------------------------------------------------------------------------------------------------------

Locomotor Training and Summer Camp Experience for Children with Incomplete SCI


The Miami Project Neuromotor Rehabilitation Research Laboratory is pleased to announce a new program involving children with incomplete spinal cord injury. Eight children who meet specific criteria will be selected for this year's 10-week Locomotor Training Summer Camp Experience from June 2 through August 8, 2008.

The program has been designed by Miami Project Principal Investigator, Dr. Edelle Field-Fote, Ph.D., P.T., and Kathleen J. Manella, P.T., M.S., an experienced physical therapist who will coordinate the project and work with the participating children. "We decided to set up the program during the summer to fit the scheduling needs of the children and their families," says Ms. Manella. "The program includes participation in a locomotor research study at The Miami Project and a summer camp experience for 6 to 14 year olds at Shake-A-Leg Miami. Shake-A-Leg provides challenging and fun activities such as sailing and kayaking in an accessible, integrated environment."

Who will participate?
The research program will enroll children, 4 to 15 years old, with incomplete spinal cord injury at T10 or above and who are able to be supported in a standing position. Children accepted into the program will take part in a research study to evaluate body weight support gait training therapy. Dr. Field-Fote's laboratory hopes to learn whether the training can help prevent or reverse secondary health problems and positively influence general wellness and quality of life for children with SCI. Presently, it is unknown whether children, because their nervous system is still developing, have more potential for recovery of walking function. The children who take part in this study will help determine the therapy's effects on muscle strength, gait, balance, mobility, cardio-pulmonary function and quality of life.

Besides spending part of their time at The Miami Project for the locomotor training study, children who are between the ages of 6 and 14 may join other children with and without disabilities at Shake-A-Leg Miami for a structured program of adaptive sailing, water sports activities, crafts and education.

For further information about the research study and summer camp experience, please contact Kathleen Manella at kmanella@med.miami.edu or call 305-243-7120.

This post has been edited by EmHope: 19 April 2008 - 02:06 PM

[Theresar360]

EmHope, on Apr 19 2008, 06:48 AM, said:

First of all, I will be keeping both of your babies in my prayers! I am not a mother yet and can't begin to know your heartbreak!!!!!!!!!! I had a cervical injury in 2001 and am now in graduate school for speech-language pathology. I see many trachs and vents. First off don't worry too much about Victoria's speech. She is still very young and has been through so much. Once she can tolorate caping the vent words will come...and no worries if she is behind others her age...she will catch up. Childrens brains are like a sponges. Children learn language from those arund them. Talk to her a lot, read stories with pictures and comment on the pictures, and include her in as much play with peers and adults. Turn all care activities in to a game or explain the steps you are following when doing some of her car (bath, brush hair, putting lotion on, changing a cath. Any speech that she can listen to especialy comments in play and story book reading, and sequential tasks will help her language. Even getting a bed bath could be turned into pla with washcloths/bath toys. I know she can't minipulate them but thats okay. The other peers or adults can play pretend with a rubber duck by making the ducky give her cheek kisses, hide from a wolf in her blankies. You could have 2 duckies and name one Victoria and have them play on her tummy, under the covers, pillow, etc. Sing songs to Victoria. Twinkle-twinkle, barney, The Farmer in the Dell. Many kids learn through music.

Anyway, I posted the below info last week...but in the wrong forum. The below research is not something your kids could be apart of right now, because they are so young yet. But this study would be worth while keeping track of, because in a couple years it might be a treatment your little ones could benifit from.

Also, PLEASE do not settle for the function you see them have right now and think that is all!!!!!!!!! It used to be that doctors said the magic numbers for gaining as much function was between 12-18months. Resent research has found that statement false!!!!!!!! People can gain sensory, movement, function throughout their life after spinal cord injury as long as they keep their bodies health and in good shape. You're little guys are still in the rough times soon after injury were their bodies are just tryig to regulate. When they are healthier and stronger in a year or two thats when they should target regrowth, strength, and rehab. Plus they are so young which is to their advantage because there could be more chance of nerve rerouting in the cord after swelling and secondary damage is gone.

SO PLEASE DON"T LOOSE THE HOPE FOR YOUR LITTLE ONES ANYTHING IS POSIBLE!!!!!!!

Below is info regarding the study at The Miami Project:

It is such a great opportunity for little ones soon after injury because, 1st more chance of recovery since they are still little and still growing, and 2nd if they get in soon after injury there is less secondary SCI damage to surrounding areas (penumbra-area will be much less!)

My prayers are with you!
Emily

-----------------------------------------------------------------------------------------------------------------

Locomotor Training and Summer Camp Experience for Children with Incomplete SCI


The Miami Project Neuromotor Rehabilitation Research Laboratory is pleased to announce a new program involving children with incomplete spinal cord injury. Eight children who meet specific criteria will be selected for this year's 10-week Locomotor Training Summer Camp Experience from June 2 through August 8, 2008.

The program has been designed by Miami Project Principal Investigator, Dr. Edelle Field-Fote, Ph.D., P.T., and Kathleen J. Manella, P.T., M.S., an experienced physical therapist who will coordinate the project and work with the participating children. "We decided to set up the program during the summer to fit the scheduling needs of the children and their families," says Ms. Manella. "The program includes participation in a locomotor research study at The Miami Project and a summer camp experience for 6 to 14 year olds at Shake-A-Leg Miami. Shake-A-Leg provides challenging and fun activities such as sailing and kayaking in an accessible, integrated environment."

Who will participate?
The research program will enroll children, 4 to 15 years old, with incomplete spinal cord injury at T10 or above and who are able to be supported in a standing position. Children accepted into the program will take part in a research study to evaluate body weight support gait training therapy. Dr. Field-Fote's laboratory hopes to learn whether the training can help prevent or reverse secondary health problems and positively influence general wellness and quality of life for children with SCI. Presently, it is unknown whether children, because their nervous system is still developing, have more potential for recovery of walking function. The children who take part in this study will help determine the therapy's effects on muscle strength, gait, balance, mobility, cardio-pulmonary function and quality of life.

Besides spending part of their time at The Miami Project for the locomotor training study, children who are between the ages of 6 and 14 may join other children with and without disabilities at Shake-A-Leg Miami for a structured program of adaptive sailing, water sports activities, crafts and education.

For further information about the research study and summer camp experience, please contact Kathleen Manella at kmanella@med.miami.edu or call 305-243-7120.

Thanks for the prayers and information. I am not giving up in anyway on progress and inprovment for Victoria. She does not seem to cry as much as she was. I think alot of this is frustration. I see more smiles everyday. I have seen more movement in her neck muscles. She can move her head side to side but not up and down as of yet. So if you ask her a question even if it means yes she shakes it no! She said "mama" yesterday and it shocked all of us. Then she just started puckering up her lips at everyone. We laughed and she just keeped doing it and smiling. What a sweet baby. Thanks again for the information. Sorry it took so long to get back to you....Theresa

[EmHope]

[/quote]

Thanks for the prayers and information. I am not giving up in anyway on progress and inprovment for Victoria. She does not seem to cry as much as she was. I think alot of this is frustration. I see more smiles everyday. I have seen more movement in her neck muscles. She can move her head side to side but not up and down as of yet. So if you ask her a question even if it means yes she shakes it no! She said "mama" yesterday and it shocked all of us. Then she just started puckering up her lips at everyone. We laughed and she just keeped doing it and smiling. What a sweet baby. Thanks again for the information. Sorry it took so long to get back to you....Theresa
[/quote]


THAT IS GREAT NEWS!!!! EVEN LESS CRYING IS A BIG SUCCESS!!
I'LL BE PRAYING FOR MORE AND MORE HAPPY MOMENTS FOR VICTORIA AND YOUR FAMILY!!!
YOU ARE A SPECIAL FAMILY AND YOU WILL ALL BE IN MY PRAYERS!!!!

EMILY