I never thought I would be one of those people. You know the ones, they get angry over and issue, and they push and push and push at it. Constantly bringing it up. Adding it to conversations even when the conversation didn't naturally go in that direction. I'm sure people wonder what the big deal is. Life works things out, they'll get to whatever it is. Now I guess I understand a little better. When it is your own child, or your own life they are leaving to "get to it," it is hard to just sit and wait. The only way anything will change with any rapidity is if someone goes and gives it a shove in the right direction. I now feel that way about pediatric medical advancements. I just got some of Cope's medical records. I have requested the rest and am just waiting for them to call. When I get them I'm going to set a timeline and fact sheet of 1) what the doctors and nurses told me, 2) what the records show they knew, but didn't tell me, 3) in hindsight what was most likely going on, and 4) if he would have been an adult instead of an infant what protocol and measures they would have taken and how that would have changed his outcome and prognosis. With that in mind I will show that medical treatment in the pediatric realm needs to catch up to the adult sector. I believe that if we were even a few years farther advanced in our pediatric medicine, that my son would not have brain damage or at least not have the amount he now lives with. I am grateful for the medicine we do have. I am grateful my son is alive, and I'm blessed to have such a special child. He has taught me so much, but I know this is a burden now and will continue to be one, and as a mother I would do anything if I could relieve that burden. I don't want other mother's to have to watch their children struggle with dailey activities that other kids find simple tasks, when it could have been avoided.
So, that is my "issue," well one of them anyway. Maybe sometime I'll let you know the rest but for right now, I'll post what I find as soon as I get his records so check back!
Showing posts with label pediatric stroke. Show all posts
Showing posts with label pediatric stroke. Show all posts
Thursday, April 26, 2012
Wednesday, February 1, 2012
Raising a Stroke Survivor
During these two weeks of Constraint Induced Therapy I've learned many things about myself, about my son, and about life in general.
One lesson I learned is that one of the most important things we can do in life is to overcome our human tendency to take the path that seems the easiest at the time. The easiest path for both Cope and I would be to not do CI at all. He has one good hand, he could simply choose to not use the other one. He wishes I would let him do that. The problem is I see that life will be easier later in life with the use of both hands. Although that means more work now, that will save him trouble later. In most peoples life they have something like that. Something that were they to work harder now, would make life easier later.
With Constraint Therapy I've learned two important things: 1) The constraint is the most important aspect. There are many things about Constraint Therapy that are just like normal therapy. They play in much the same ways. There are slight differences, like they don't care about his feet at all, or what he is doing developmentally. All they care about is that affected hand. They do a rating scale to determine a starting place, and then at the end of the two weeks the goal is that he has moved up on that rating scale. 2) It really depends on the child what they will do. With Cope his range of motion is very good and muscle tone is fairly good as well. He simply has learned that he doesn't need to use that hand, so he doesn't. A practice he has taught himself is having to be changed.
That is true in all our lives. Each of us have bad habits that are hard to break. Our brain tells us it would be easier to just keep on living as we are rather then improve. In some ways it would be, but once we have use of our affected hand, once those bad habits are no longer holding us back, we can see why the work was so important.
Raising a stroke survivor has been equally the best and worst experience of my life. Although I would never wish a stroke on anyone's child, I am so greatful for my son and the lessons I have learned on our journey. I've learned to understand and love those with medical and mental issues more then I use to. I've learned to appreciate and empathize with their parents. I've learned that to have a child, no matter how damaged their brain or other parts of their body may be, is an amazing gift. I am so blessed to have my son. He is healthy and now we just have improvement to look forward to. One day at a time is still one day with him. One day to love, one day to laugh, and one day to grow together.
One lesson I learned is that one of the most important things we can do in life is to overcome our human tendency to take the path that seems the easiest at the time. The easiest path for both Cope and I would be to not do CI at all. He has one good hand, he could simply choose to not use the other one. He wishes I would let him do that. The problem is I see that life will be easier later in life with the use of both hands. Although that means more work now, that will save him trouble later. In most peoples life they have something like that. Something that were they to work harder now, would make life easier later.
With Constraint Therapy I've learned two important things: 1) The constraint is the most important aspect. There are many things about Constraint Therapy that are just like normal therapy. They play in much the same ways. There are slight differences, like they don't care about his feet at all, or what he is doing developmentally. All they care about is that affected hand. They do a rating scale to determine a starting place, and then at the end of the two weeks the goal is that he has moved up on that rating scale. 2) It really depends on the child what they will do. With Cope his range of motion is very good and muscle tone is fairly good as well. He simply has learned that he doesn't need to use that hand, so he doesn't. A practice he has taught himself is having to be changed.
That is true in all our lives. Each of us have bad habits that are hard to break. Our brain tells us it would be easier to just keep on living as we are rather then improve. In some ways it would be, but once we have use of our affected hand, once those bad habits are no longer holding us back, we can see why the work was so important.
Tuesday, January 17, 2012
Constraint Induced Therapy
I know Cope has his own page, but I want to do an intro to all the details I will be posting on his page in the following few weeks.
Cope's stroke was massive, affecting a majority of the left side of his brain. Brains work opposite, so his right side is the "affected" side, and his left is the "unaffected." Right now, he rarely uses his affected side. I've been told it's disassociation, in which his hand doesn't feel like it belongs to his body, so he would prefer not to use it. This happens because the left side of his brain is not firing the way it should due to the damage. In order to get his hand to start feeling like it belongs to him, we force him to use it so that his brain will start functioning more. That is what therapy is all about. It helps tell his brain that his hand is still there. I found, after much study and reading on the internet, that there are things that can be done to "jump-start" this process. One of those things is Constraint Induced Therapy.
After several months of fighting with the insurance, and then trying to establish dates we could do it, we are finally starting Constraint Induced Therapy next week with Cope. I'll be in Albuquerque for two weeks. I'm excited for the improvement this will hopefully bring. For updates on exactly what is going on check out Cope's page by clicking on his picture below.
We will start Monday the 23rd. Cope will wear a constraint brace, on his unaffected arm, that runs from his shoulders down past his fingers. It will remain on for 14 consecutive days. (I'll post pictures on his page later so you can see.) During this time it will only be taken off for sleeping and bathing. Even eating he will be required to keep it on, forcing him to eat with his affected hand. The brace will inhibit his ability to use his unaffected hand, forcing him to use his affected one. During the two week period he will be receiving Physical and Occupational therapy. There will be two, two-hour sessions of therapy. They will be continued for five days after which he will get two days off, and then will have five days on. During his two days off he will still wear the brace to encourage continued usage of the affected hand. The hope is that such grueling amounts of therapy and lack of use of his unaffected hand, will jump start his brain and allow for continued progress once he is done with the therapy.
I will post pictures to his page and will notate any progress through-out the two weeks. They tell me it will be a grueling two weeks for both him and I as I will have to deal with his frustration and will have to take the time to help him feed himself with a hand he, as of now, has no control over. I know that, but if it improves his ussage of that hand then I say, "Let the fun begin!" :)
Before we head out we get to meet Madison Steiner, founder of Peaches Neet Feet http://www.peachsneetfeet.blogspot.com/. Cope's Pediatrician, Dr. Nnebe, sponsored Cope, making it possible for Madison and her team to paint him a pair of their beautiful shoes. We are thrilled to get to meet her and be able to get Cope's shoes. My hope is that these will be the shoes he takes his first steps in, as he is not yet walking. I will post pictures and a post on his page after Friday.
Cope's stroke was massive, affecting a majority of the left side of his brain. Brains work opposite, so his right side is the "affected" side, and his left is the "unaffected." Right now, he rarely uses his affected side. I've been told it's disassociation, in which his hand doesn't feel like it belongs to his body, so he would prefer not to use it. This happens because the left side of his brain is not firing the way it should due to the damage. In order to get his hand to start feeling like it belongs to him, we force him to use it so that his brain will start functioning more. That is what therapy is all about. It helps tell his brain that his hand is still there. I found, after much study and reading on the internet, that there are things that can be done to "jump-start" this process. One of those things is Constraint Induced Therapy.
After several months of fighting with the insurance, and then trying to establish dates we could do it, we are finally starting Constraint Induced Therapy next week with Cope. I'll be in Albuquerque for two weeks. I'm excited for the improvement this will hopefully bring. For updates on exactly what is going on check out Cope's page by clicking on his picture below.
We will start Monday the 23rd. Cope will wear a constraint brace, on his unaffected arm, that runs from his shoulders down past his fingers. It will remain on for 14 consecutive days. (I'll post pictures on his page later so you can see.) During this time it will only be taken off for sleeping and bathing. Even eating he will be required to keep it on, forcing him to eat with his affected hand. The brace will inhibit his ability to use his unaffected hand, forcing him to use his affected one. During the two week period he will be receiving Physical and Occupational therapy. There will be two, two-hour sessions of therapy. They will be continued for five days after which he will get two days off, and then will have five days on. During his two days off he will still wear the brace to encourage continued usage of the affected hand. The hope is that such grueling amounts of therapy and lack of use of his unaffected hand, will jump start his brain and allow for continued progress once he is done with the therapy.
I will post pictures to his page and will notate any progress through-out the two weeks. They tell me it will be a grueling two weeks for both him and I as I will have to deal with his frustration and will have to take the time to help him feed himself with a hand he, as of now, has no control over. I know that, but if it improves his ussage of that hand then I say, "Let the fun begin!" :)
Before we head out we get to meet Madison Steiner, founder of Peaches Neet Feet http://www.peachsneetfeet.blogspot.com/. Cope's Pediatrician, Dr. Nnebe, sponsored Cope, making it possible for Madison and her team to paint him a pair of their beautiful shoes. We are thrilled to get to meet her and be able to get Cope's shoes. My hope is that these will be the shoes he takes his first steps in, as he is not yet walking. I will post pictures and a post on his page after Friday.
Monday, December 5, 2011
Playing in the Snow
Took the kids out to play in the snow today.
One thing I realized, never try and put a glove on a child who has had a stroke and doesn't use their hand much. It was next to impossible to do.
Notice his right hand in the picture. I guess I need to get him mittens. I finally left his hand bunched up in a ball inside the glove and quit trying to distribute the fingers.
Cope hated the snow. As soon as I sat him down in it he began to cry.
I took him back inside and he took a nap while Kailey and I finished playing.
She made a snow man, with a little help, and then we went inside for hot chocolate and lunch.
One thing I realized, never try and put a glove on a child who has had a stroke and doesn't use their hand much. It was next to impossible to do.
Notice his right hand in the picture. I guess I need to get him mittens. I finally left his hand bunched up in a ball inside the glove and quit trying to distribute the fingers.
Cope hated the snow. As soon as I sat him down in it he began to cry.
I helped him make a snow angel and that is about the extent I could get him to "play" in the snow.
The top one is a close up of Cope's. The second one is Kailey and Cope's. Cope's is on the left and Kailey's is the bigger one, on the right.
I took him back inside and he took a nap while Kailey and I finished playing.
She made a snow man, with a little help, and then we went inside for hot chocolate and lunch.
Thursday, November 17, 2011
Welcome
The purpose of this blog is . . . well it has lots of purposes.
1) I want to be able to increase my writing exposure. I thought getting on wikihow and then creating a blog would be a good start. I love writing in all forms, but what I enjoy more is editing. I love to take a red pin . . . or click on the editing tab and tear a paper apart. If you've ever had me edit a paper you know I mean that literally. For me the more red the better, and the best part is I use that theory on myself as well. I'm not the best writer. I make mistakes, especially when I'm typing. Sometimes what I say doesn't make sense, but when I'm able to take what I've written and tear it apart, then usually what I write turns out to be something worth reading.
2) I want to be able to use this blog as a sounding board for those who need it. Life is hard, but it can be easier if we know that others have similar struggles. No one has the exact same hurdles in their life but many are similar. There may be parents out there who like me have had to figure out how to get a child who refuses to sleep to go to bed, parents who have had a child who had a stroke, parents who have been told they can't or shouldn't have anymore children, parents who are looking at adoption. The list could continue for pages. I've had many struggles in my life, but I've also had many joys. Joy greater then I thought I ever could have. Joys that outnumber the struggles. I want this site to be a place to share the struggles with the joy, to give those struggling hope.
3)This will be a place to brag. I have the most wonderful family in the world and therefore have the right to brag about them. So yes, this site will include what awesome children I have and how amazing my husband is.
4) This will be a place of ideas. The more heads together the better ideas are, so as I find good ideas, recipes, crafts, pictures . . . pretty much anything I like I will be adding.
The basic purpose is for each person who visits to leave knowing that there is more to a person then what appears at first glance.
Here is what I have created on my blog so far:
* I have a Writer's Corner. I'm going to try and give grammatical rules, writers tips, and information I find. I'll start with one or two a month depending on the time I have. Click on the picture of my daughter writing for the first time, and it will take you there. Under what I have written is a place for comments and questions. Feel free to leave them!
* Right under the main picture are sites that I like and pages that I've created. If you click on the name it will take you to the site or page.
At the bottom of the page is my brag column for my kids. Click on their picture to get their monthly updates.
* Each month I will also do a post. It will be on whatever I want, but if you have a question or requests feel free to comment under the previous months post and let me know. More will be coming in the future.
This site will be a constant evolving project, but for now welcome to my blog!
1) I want to be able to increase my writing exposure. I thought getting on wikihow and then creating a blog would be a good start. I love writing in all forms, but what I enjoy more is editing. I love to take a red pin . . . or click on the editing tab and tear a paper apart. If you've ever had me edit a paper you know I mean that literally. For me the more red the better, and the best part is I use that theory on myself as well. I'm not the best writer. I make mistakes, especially when I'm typing. Sometimes what I say doesn't make sense, but when I'm able to take what I've written and tear it apart, then usually what I write turns out to be something worth reading.
2) I want to be able to use this blog as a sounding board for those who need it. Life is hard, but it can be easier if we know that others have similar struggles. No one has the exact same hurdles in their life but many are similar. There may be parents out there who like me have had to figure out how to get a child who refuses to sleep to go to bed, parents who have had a child who had a stroke, parents who have been told they can't or shouldn't have anymore children, parents who are looking at adoption. The list could continue for pages. I've had many struggles in my life, but I've also had many joys. Joy greater then I thought I ever could have. Joys that outnumber the struggles. I want this site to be a place to share the struggles with the joy, to give those struggling hope.
3)This will be a place to brag. I have the most wonderful family in the world and therefore have the right to brag about them. So yes, this site will include what awesome children I have and how amazing my husband is.
4) This will be a place of ideas. The more heads together the better ideas are, so as I find good ideas, recipes, crafts, pictures . . . pretty much anything I like I will be adding.
The basic purpose is for each person who visits to leave knowing that there is more to a person then what appears at first glance.
Here is what I have created on my blog so far:
* I have a Writer's Corner. I'm going to try and give grammatical rules, writers tips, and information I find. I'll start with one or two a month depending on the time I have. Click on the picture of my daughter writing for the first time, and it will take you there. Under what I have written is a place for comments and questions. Feel free to leave them!
* Right under the main picture are sites that I like and pages that I've created. If you click on the name it will take you to the site or page.
At the bottom of the page is my brag column for my kids. Click on their picture to get their monthly updates.
* Each month I will also do a post. It will be on whatever I want, but if you have a question or requests feel free to comment under the previous months post and let me know. More will be coming in the future.
This site will be a constant evolving project, but for now welcome to my blog!
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