Marissa is rebelling against her "machines."

[Terry]

I posted this in the teenager section hoping for some advice from someone closer to Marissa's age. I'm posting it hear hoping to hear from someone who might be going through this or remember having done it themselves.

Hi Everyone,

I have a 9 going on 10 year old step-daughter who has CF. She has to do 3 albuterol nebs, 1 pulmozyme neb, use her vest 3 times a day (20 minutes each), and has a feeding pump at night. She also takes enzymes, vitamins, and prevacid. Finally, she uses a Flovent inhaler morning and night.

None of her equipment is in bad shape (YET). None of it is the same age, as we replace each piece as it shows signs of wearing down. In fact, all of it has been replaced within the last 6 months. So there shouldn't be any reason "mechanically" for all three machines to be acting up at once.

A little background info, she wasn't diagnosed until she was 4 years old. For the next two years her grandmother lived in the house with her and her father and was the med police. The grandmother moved out, and for 9 months it was just her and her father.

She, like any little girl, had her dad wrapped around her little finger, and would beg to have a "break" from her treatments, and for several months managed to con him into only doing the ihalers and her pills. In I walk 2 1/2 years ago.

The first two weeks I was here, I would ask WHEN is she going to do her meds, and she would cry, and he would say we'll start tomorrow. She couldn't walk accross the room without having a coughing spell, was so skinny her backbone stuck out, and was battling one infection after another.

On the 2 week mark he went to bed early, and I had my eldest daughter show me how all the machines worked, and she restarted her meds and feedings, all the while protesting. In the morning she cried when we were to begin the morning routine, her father seemed to be falling for it, and I invited him to go outside with me for a "chat."

I told him that it was my opinion that what he was doing (or not doing), although he was doing it out of love for her, was neglectful, and I would not stay here if she wasn't going to be properly cared for. He decided to side with me, and we agreed to treat everything as matter of fact, in the same way we would react to her not brushing her teeth.

Okay, now the present...suddenly Marissa's feeding tube had stopped "working," and she would wake up with almost a full bag of food. I had a feeling she was turning it off. After about a week of it "malfunctioning," I had her stay on it after she woke up during the day on a Saturday so I could see it shut off by itself. I had already tested it one day while she was at school by filling the bag with water, and letting it pump into the tub, so I knew it was in working order. Needless to say, the pump finished her feeding without an incident. I told her that if it didn't finish feeding her at night, she would have to stay on it until it finished in the day from here on out. She didn't like that too much, and somehow the pump has managed to repair itself.

Then she started "hiding" her pills and "forgetting to take them. I knew we were on a road for trouble cause she had not as of yet had a problem with taking the pills. That we corrected okay, we just started hovering over her until they were all taken again.

This month the vest has decided to "come apart" every 2 minutes while she is on it. I see her yank the hoses, and also try to keep the vest off her chest by pulling on it. And the nebulizer has "sprouted wings" and falls off the table, but ends up halfway across the room. The nebulizer sits on the same table that it has for the past year. About a month ago we had to replace her neb because it flew across the room and broke, ever since it won't stop flying. We have resorted to having her put the neb on the floor a the beginning of her treatments, but I am not so sure it should be on the floor. It is more of a pick your battles sort of thing. We are getting ready to duct tape her vest together, as there is no way she is properly getting PT having to keep putting the hoses back in. FYI, it is not one particular part of the hose coming out, it is
all 4 attachment areas, just not at the same time.

I know this was long, and I apologize. I know she must be angry, but how would you suggest we handle this??? Oh, as all of this started, she first started arguing about doing the treatments. Her mother had taken her to Ocean City, and she got away with not doing most of her treatments, and tried to get away with it here.

I hate being seen as the med-nazi or the horrible stepmother, but I have seen her health improve drastically with adhering to her med schedule. Unfortunately, it seems I am the one who stands up to all the kids.

I am ready for you all to shoot me for being "insensitive." Trust me, I already feel that way when she is crying and I don't give in, but I am "insensitive" because I know how quickly she goes downhill. She was in horrible shape after only 1 week in OC. At diagnosis her father was told she would probably not make it past 9 years old, which I think is why he hated making her sit in the chair when she wanted to run and play. She is very healthy now after doing ALL her treatments for 2 1/2 years.

Thanks for anything you can think of to help...
Terry

 

[Terry]

I posted this in the teenager section hoping for some advice from someone closer to Marissa's age. I'm posting it hear hoping to hear from someone who might be going through this or remember having done it themselves.

Hi Everyone,

I have a 9 going on 10 year old step-daughter who has CF. She has to do 3 albuterol nebs, 1 pulmozyme neb, use her vest 3 times a day (20 minutes each), and has a feeding pump at night. She also takes enzymes, vitamins, and prevacid. Finally, she uses a Flovent inhaler morning and night.

None of her equipment is in bad shape (YET). None of it is the same age, as we replace each piece as it shows signs of wearing down. In fact, all of it has been replaced within the last 6 months. So there shouldn't be any reason "mechanically" for all three machines to be acting up at once.

A little background info, she wasn't diagnosed until she was 4 years old. For the next two years her grandmother lived in the house with her and her father and was the med police. The grandmother moved out, and for 9 months it was just her and her father.

She, like any little girl, had her dad wrapped around her little finger, and would beg to have a "break" from her treatments, and for several months managed to con him into only doing the ihalers and her pills. In I walk 2 1/2 years ago.

The first two weeks I was here, I would ask WHEN is she going to do her meds, and she would cry, and he would say we'll start tomorrow. She couldn't walk accross the room without having a coughing spell, was so skinny her backbone stuck out, and was battling one infection after another.

On the 2 week mark he went to bed early, and I had my eldest daughter show me how all the machines worked, and she restarted her meds and feedings, all the while protesting. In the morning she cried when we were to begin the morning routine, her father seemed to be falling for it, and I invited him to go outside with me for a "chat."

I told him that it was my opinion that what he was doing (or not doing), although he was doing it out of love for her, was neglectful, and I would not stay here if she wasn't going to be properly cared for. He decided to side with me, and we agreed to treat everything as matter of fact, in the same way we would react to her not brushing her teeth.

Okay, now the present...suddenly Marissa's feeding tube had stopped "working," and she would wake up with almost a full bag of food. I had a feeling she was turning it off. After about a week of it "malfunctioning," I had her stay on it after she woke up during the day on a Saturday so I could see it shut off by itself. I had already tested it one day while she was at school by filling the bag with water, and letting it pump into the tub, so I knew it was in working order. Needless to say, the pump finished her feeding without an incident. I told her that if it didn't finish feeding her at night, she would have to stay on it until it finished in the day from here on out. She didn't like that too much, and somehow the pump has managed to repair itself.

Then she started "hiding" her pills and "forgetting to take them. I knew we were on a road for trouble cause she had not as of yet had a problem with taking the pills. That we corrected okay, we just started hovering over her until they were all taken again.

This month the vest has decided to "come apart" every 2 minutes while she is on it. I see her yank the hoses, and also try to keep the vest off her chest by pulling on it. And the nebulizer has "sprouted wings" and falls off the table, but ends up halfway across the room. The nebulizer sits on the same table that it has for the past year. About a month ago we had to replace her neb because it flew across the room and broke, ever since it won't stop flying. We have resorted to having her put the neb on the floor a the beginning of her treatments, but I am not so sure it should be on the floor. It is more of a pick your battles sort of thing. We are getting ready to duct tape her vest together, as there is no way she is properly getting PT having to keep putting the hoses back in. FYI, it is not one particular part of the hose coming out, it is
all 4 attachment areas, just not at the same time.

I know this was long, and I apologize. I know she must be angry, but how would you suggest we handle this??? Oh, as all of this started, she first started arguing about doing the treatments. Her mother had taken her to Ocean City, and she got away with not doing most of her treatments, and tried to get away with it here.

I hate being seen as the med-nazi or the horrible stepmother, but I have seen her health improve drastically with adhering to her med schedule. Unfortunately, it seems I am the one who stands up to all the kids.

I am ready for you all to shoot me for being "insensitive." Trust me, I already feel that way when she is crying and I don't give in, but I am "insensitive" because I know how quickly she goes downhill. She was in horrible shape after only 1 week in OC. At diagnosis her father was told she would probably not make it past 9 years old, which I think is why he hated making her sit in the chair when she wanted to run and play. She is very healthy now after doing ALL her treatments for 2 1/2 years.

Thanks for anything you can think of to help...
Terry

 

[Terry]

I posted this in the teenager section hoping for some advice from someone closer to Marissa's age. I'm posting it hear hoping to hear from someone who might be going through this or remember having done it themselves.

Hi Everyone,

I have a 9 going on 10 year old step-daughter who has CF. She has to do 3 albuterol nebs, 1 pulmozyme neb, use her vest 3 times a day (20 minutes each), and has a feeding pump at night. She also takes enzymes, vitamins, and prevacid. Finally, she uses a Flovent inhaler morning and night.

None of her equipment is in bad shape (YET). None of it is the same age, as we replace each piece as it shows signs of wearing down. In fact, all of it has been replaced within the last 6 months. So there shouldn't be any reason "mechanically" for all three machines to be acting up at once.

A little background info, she wasn't diagnosed until she was 4 years old. For the next two years her grandmother lived in the house with her and her father and was the med police. The grandmother moved out, and for 9 months it was just her and her father.

She, like any little girl, had her dad wrapped around her little finger, and would beg to have a "break" from her treatments, and for several months managed to con him into only doing the ihalers and her pills. In I walk 2 1/2 years ago.

The first two weeks I was here, I would ask WHEN is she going to do her meds, and she would cry, and he would say we'll start tomorrow. She couldn't walk accross the room without having a coughing spell, was so skinny her backbone stuck out, and was battling one infection after another.

On the 2 week mark he went to bed early, and I had my eldest daughter show me how all the machines worked, and she restarted her meds and feedings, all the while protesting. In the morning she cried when we were to begin the morning routine, her father seemed to be falling for it, and I invited him to go outside with me for a "chat."

I told him that it was my opinion that what he was doing (or not doing), although he was doing it out of love for her, was neglectful, and I would not stay here if she wasn't going to be properly cared for. He decided to side with me, and we agreed to treat everything as matter of fact, in the same way we would react to her not brushing her teeth.

Okay, now the present...suddenly Marissa's feeding tube had stopped "working," and she would wake up with almost a full bag of food. I had a feeling she was turning it off. After about a week of it "malfunctioning," I had her stay on it after she woke up during the day on a Saturday so I could see it shut off by itself. I had already tested it one day while she was at school by filling the bag with water, and letting it pump into the tub, so I knew it was in working order. Needless to say, the pump finished her feeding without an incident. I told her that if it didn't finish feeding her at night, she would have to stay on it until it finished in the day from here on out. She didn't like that too much, and somehow the pump has managed to repair itself.

Then she started "hiding" her pills and "forgetting to take them. I knew we were on a road for trouble cause she had not as of yet had a problem with taking the pills. That we corrected okay, we just started hovering over her until they were all taken again.

This month the vest has decided to "come apart" every 2 minutes while she is on it. I see her yank the hoses, and also try to keep the vest off her chest by pulling on it. And the nebulizer has "sprouted wings" and falls off the table, but ends up halfway across the room. The nebulizer sits on the same table that it has for the past year. About a month ago we had to replace her neb because it flew across the room and broke, ever since it won't stop flying. We have resorted to having her put the neb on the floor a the beginning of her treatments, but I am not so sure it should be on the floor. It is more of a pick your battles sort of thing. We are getting ready to duct tape her vest together, as there is no way she is properly getting PT having to keep putting the hoses back in. FYI, it is not one particular part of the hose coming out, it is
all 4 attachment areas, just not at the same time.

I know this was long, and I apologize. I know she must be angry, but how would you suggest we handle this??? Oh, as all of this started, she first started arguing about doing the treatments. Her mother had taken her to Ocean City, and she got away with not doing most of her treatments, and tried to get away with it here.

I hate being seen as the med-nazi or the horrible stepmother, but I have seen her health improve drastically with adhering to her med schedule. Unfortunately, it seems I am the one who stands up to all the kids.

I am ready for you all to shoot me for being "insensitive." Trust me, I already feel that way when she is crying and I don't give in, but I am "insensitive" because I know how quickly she goes downhill. She was in horrible shape after only 1 week in OC. At diagnosis her father was told she would probably not make it past 9 years old, which I think is why he hated making her sit in the chair when she wanted to run and play. She is very healthy now after doing ALL her treatments for 2 1/2 years.

Thanks for anything you can think of to help...
Terry

 

[Terry]

I posted this in the teenager section hoping for some advice from someone closer to Marissa's age. I'm posting it hear hoping to hear from someone who might be going through this or remember having done it themselves.

Hi Everyone,

I have a 9 going on 10 year old step-daughter who has CF. She has to do 3 albuterol nebs, 1 pulmozyme neb, use her vest 3 times a day (20 minutes each), and has a feeding pump at night. She also takes enzymes, vitamins, and prevacid. Finally, she uses a Flovent inhaler morning and night.

None of her equipment is in bad shape (YET). None of it is the same age, as we replace each piece as it shows signs of wearing down. In fact, all of it has been replaced within the last 6 months. So there shouldn't be any reason "mechanically" for all three machines to be acting up at once.

A little background info, she wasn't diagnosed until she was 4 years old. For the next two years her grandmother lived in the house with her and her father and was the med police. The grandmother moved out, and for 9 months it was just her and her father.

She, like any little girl, had her dad wrapped around her little finger, and would beg to have a "break" from her treatments, and for several months managed to con him into only doing the ihalers and her pills. In I walk 2 1/2 years ago.

The first two weeks I was here, I would ask WHEN is she going to do her meds, and she would cry, and he would say we'll start tomorrow. She couldn't walk accross the room without having a coughing spell, was so skinny her backbone stuck out, and was battling one infection after another.

On the 2 week mark he went to bed early, and I had my eldest daughter show me how all the machines worked, and she restarted her meds and feedings, all the while protesting. In the morning she cried when we were to begin the morning routine, her father seemed to be falling for it, and I invited him to go outside with me for a "chat."

I told him that it was my opinion that what he was doing (or not doing), although he was doing it out of love for her, was neglectful, and I would not stay here if she wasn't going to be properly cared for. He decided to side with me, and we agreed to treat everything as matter of fact, in the same way we would react to her not brushing her teeth.

Okay, now the present...suddenly Marissa's feeding tube had stopped "working," and she would wake up with almost a full bag of food. I had a feeling she was turning it off. After about a week of it "malfunctioning," I had her stay on it after she woke up during the day on a Saturday so I could see it shut off by itself. I had already tested it one day while she was at school by filling the bag with water, and letting it pump into the tub, so I knew it was in working order. Needless to say, the pump finished her feeding without an incident. I told her that if it didn't finish feeding her at night, she would have to stay on it until it finished in the day from here on out. She didn't like that too much, and somehow the pump has managed to repair itself.

Then she started "hiding" her pills and "forgetting to take them. I knew we were on a road for trouble cause she had not as of yet had a problem with taking the pills. That we corrected okay, we just started hovering over her until they were all taken again.

This month the vest has decided to "come apart" every 2 minutes while she is on it. I see her yank the hoses, and also try to keep the vest off her chest by pulling on it. And the nebulizer has "sprouted wings" and falls off the table, but ends up halfway across the room. The nebulizer sits on the same table that it has for the past year. About a month ago we had to replace her neb because it flew across the room and broke, ever since it won't stop flying. We have resorted to having her put the neb on the floor a the beginning of her treatments, but I am not so sure it should be on the floor. It is more of a pick your battles sort of thing. We are getting ready to duct tape her vest together, as there is no way she is properly getting PT having to keep putting the hoses back in. FYI, it is not one particular part of the hose coming out, it is
all 4 attachment areas, just not at the same time.

I know this was long, and I apologize. I know she must be angry, but how would you suggest we handle this??? Oh, as all of this started, she first started arguing about doing the treatments. Her mother had taken her to Ocean City, and she got away with not doing most of her treatments, and tried to get away with it here.

I hate being seen as the med-nazi or the horrible stepmother, but I have seen her health improve drastically with adhering to her med schedule. Unfortunately, it seems I am the one who stands up to all the kids.

I am ready for you all to shoot me for being "insensitive." Trust me, I already feel that way when she is crying and I don't give in, but I am "insensitive" because I know how quickly she goes downhill. She was in horrible shape after only 1 week in OC. At diagnosis her father was told she would probably not make it past 9 years old, which I think is why he hated making her sit in the chair when she wanted to run and play. She is very healthy now after doing ALL her treatments for 2 1/2 years.

Thanks for anything you can think of to help...
Terry

 

[Terry]

I posted this in the teenager section hoping for some advice from someone closer to Marissa's age. I'm posting it hear hoping to hear from someone who might be going through this or remember having done it themselves.
<br />
<br />Hi Everyone,
<br />
<br />I have a 9 going on 10 year old step-daughter who has CF. She has to do 3 albuterol nebs, 1 pulmozyme neb, use her vest 3 times a day (20 minutes each), and has a feeding pump at night. She also takes enzymes, vitamins, and prevacid. Finally, she uses a Flovent inhaler morning and night.
<br />
<br />None of her equipment is in bad shape (YET). None of it is the same age, as we replace each piece as it shows signs of wearing down. In fact, all of it has been replaced within the last 6 months. So there shouldn't be any reason "mechanically" for all three machines to be acting up at once.
<br />
<br />A little background info, she wasn't diagnosed until she was 4 years old. For the next two years her grandmother lived in the house with her and her father and was the med police. The grandmother moved out, and for 9 months it was just her and her father.
<br />
<br />She, like any little girl, had her dad wrapped around her little finger, and would beg to have a "break" from her treatments, and for several months managed to con him into only doing the ihalers and her pills. In I walk 2 1/2 years ago.
<br />
<br />The first two weeks I was here, I would ask WHEN is she going to do her meds, and she would cry, and he would say we'll start tomorrow. She couldn't walk accross the room without having a coughing spell, was so skinny her backbone stuck out, and was battling one infection after another.
<br />
<br />On the 2 week mark he went to bed early, and I had my eldest daughter show me how all the machines worked, and she restarted her meds and feedings, all the while protesting. In the morning she cried when we were to begin the morning routine, her father seemed to be falling for it, and I invited him to go outside with me for a "chat."
<br />
<br />I told him that it was my opinion that what he was doing (or not doing), although he was doing it out of love for her, was neglectful, and I would not stay here if she wasn't going to be properly cared for. He decided to side with me, and we agreed to treat everything as matter of fact, in the same way we would react to her not brushing her teeth.
<br />
<br />Okay, now the present...suddenly Marissa's feeding tube had stopped "working," and she would wake up with almost a full bag of food. I had a feeling she was turning it off. After about a week of it "malfunctioning," I had her stay on it after she woke up during the day on a Saturday so I could see it shut off by itself. I had already tested it one day while she was at school by filling the bag with water, and letting it pump into the tub, so I knew it was in working order. Needless to say, the pump finished her feeding without an incident. I told her that if it didn't finish feeding her at night, she would have to stay on it until it finished in the day from here on out. She didn't like that too much, and somehow the pump has managed to repair itself.
<br />
<br />Then she started "hiding" her pills and "forgetting to take them. I knew we were on a road for trouble cause she had not as of yet had a problem with taking the pills. That we corrected okay, we just started hovering over her until they were all taken again.
<br />
<br />This month the vest has decided to "come apart" every 2 minutes while she is on it. I see her yank the hoses, and also try to keep the vest off her chest by pulling on it. And the nebulizer has "sprouted wings" and falls off the table, but ends up halfway across the room. The nebulizer sits on the same table that it has for the past year. About a month ago we had to replace her neb because it flew across the room and broke, ever since it won't stop flying. We have resorted to having her put the neb on the floor a the beginning of her treatments, but I am not so sure it should be on the floor. It is more of a pick your battles sort of thing. We are getting ready to duct tape her vest together, as there is no way she is properly getting PT having to keep putting the hoses back in. FYI, it is not one particular part of the hose coming out, it is
<br />all 4 attachment areas, just not at the same time.
<br />
<br />I know this was long, and I apologize. I know she must be angry, but how would you suggest we handle this??? Oh, as all of this started, she first started arguing about doing the treatments. Her mother had taken her to Ocean City, and she got away with not doing most of her treatments, and tried to get away with it here.
<br />
<br />I hate being seen as the med-nazi or the horrible stepmother, but I have seen her health improve drastically with adhering to her med schedule. Unfortunately, it seems I am the one who stands up to all the kids.
<br />
<br />I am ready for you all to shoot me for being "insensitive." Trust me, I already feel that way when she is crying and I don't give in, but I am "insensitive" because I know how quickly she goes downhill. She was in horrible shape after only 1 week in OC. At diagnosis her father was told she would probably not make it past 9 years old, which I think is why he hated making her sit in the chair when she wanted to run and play. She is very healthy now after doing ALL her treatments for 2 1/2 years.
<br />
<br />Thanks for anything you can think of to help...
<br />Terry

 

[welshwitch]

Marissa is rebelling against her

Hey, Terri, I responded to your post in the teen section, happy to help.

 

[welshwitch]

Marissa is rebelling against her

Hey, Terri, I responded to your post in the teen section, happy to help.

 

[welshwitch]

Marissa is rebelling against her

Hey, Terri, I responded to your post in the teen section, happy to help.

 

[welshwitch]

Marissa is rebelling against her

Hey, Terri, I responded to your post in the teen section, happy to help.

 

[welshwitch]

Marissa is rebelling against her

Hey, Terri, I responded to your post in the teen section, happy to help.

 

[Liza]

Marissa is rebelling against her "machines.

Wow, I can begin to think of how to handle all of this at once. You are a remarkable woman for all you have done and all that you do for your step-daughter. I aplaud you for sticking to it, and making Dad find his courage to do what needs to be done.

When you say the neb. "flies" across the room, I am guessing you mean the machine since you put it on the floor. I don't see any problem with it being on the floor for her treatments. We would set ours on the carpet so that it wouldn't vibrate when it lost one of the little rubber feet.

As for the vest, and it's tubing's coming off at different times. I offer this suggestion, although it is more work for you and dad... tell her that if her vest is going to keep malfunctioning like this and they are so expensive to relace that you guys are going have to do manual percussion. And that even though it takes more time to do it, you want her to get the most out of her PT that she can and this is the only way to do it when her vest is acting up like it is.

Another thought is to talk to her CF docs about the improvement she's made in the last two years since she'd been doing her treatments properly. If that's already been done, and not all docs can get through to them, perhaps she needs to talk with a psychologist that is familiar with CF or chronically ill children.

Much luck in getting through to her.

 

[Liza]

Marissa is rebelling against her "machines.

Wow, I can begin to think of how to handle all of this at once. You are a remarkable woman for all you have done and all that you do for your step-daughter. I aplaud you for sticking to it, and making Dad find his courage to do what needs to be done.

When you say the neb. "flies" across the room, I am guessing you mean the machine since you put it on the floor. I don't see any problem with it being on the floor for her treatments. We would set ours on the carpet so that it wouldn't vibrate when it lost one of the little rubber feet.

As for the vest, and it's tubing's coming off at different times. I offer this suggestion, although it is more work for you and dad... tell her that if her vest is going to keep malfunctioning like this and they are so expensive to relace that you guys are going have to do manual percussion. And that even though it takes more time to do it, you want her to get the most out of her PT that she can and this is the only way to do it when her vest is acting up like it is.

Another thought is to talk to her CF docs about the improvement she's made in the last two years since she'd been doing her treatments properly. If that's already been done, and not all docs can get through to them, perhaps she needs to talk with a psychologist that is familiar with CF or chronically ill children.

Much luck in getting through to her.

 

[Liza]

Marissa is rebelling against her "machines.

Wow, I can begin to think of how to handle all of this at once. You are a remarkable woman for all you have done and all that you do for your step-daughter. I aplaud you for sticking to it, and making Dad find his courage to do what needs to be done.

When you say the neb. "flies" across the room, I am guessing you mean the machine since you put it on the floor. I don't see any problem with it being on the floor for her treatments. We would set ours on the carpet so that it wouldn't vibrate when it lost one of the little rubber feet.

As for the vest, and it's tubing's coming off at different times. I offer this suggestion, although it is more work for you and dad... tell her that if her vest is going to keep malfunctioning like this and they are so expensive to relace that you guys are going have to do manual percussion. And that even though it takes more time to do it, you want her to get the most out of her PT that she can and this is the only way to do it when her vest is acting up like it is.

Another thought is to talk to her CF docs about the improvement she's made in the last two years since she'd been doing her treatments properly. If that's already been done, and not all docs can get through to them, perhaps she needs to talk with a psychologist that is familiar with CF or chronically ill children.

Much luck in getting through to her.

 

[Liza]

Marissa is rebelling against her "machines.

Wow, I can begin to think of how to handle all of this at once. You are a remarkable woman for all you have done and all that you do for your step-daughter. I aplaud you for sticking to it, and making Dad find his courage to do what needs to be done.

When you say the neb. "flies" across the room, I am guessing you mean the machine since you put it on the floor. I don't see any problem with it being on the floor for her treatments. We would set ours on the carpet so that it wouldn't vibrate when it lost one of the little rubber feet.

As for the vest, and it's tubing's coming off at different times. I offer this suggestion, although it is more work for you and dad... tell her that if her vest is going to keep malfunctioning like this and they are so expensive to relace that you guys are going have to do manual percussion. And that even though it takes more time to do it, you want her to get the most out of her PT that she can and this is the only way to do it when her vest is acting up like it is.

Another thought is to talk to her CF docs about the improvement she's made in the last two years since she'd been doing her treatments properly. If that's already been done, and not all docs can get through to them, perhaps she needs to talk with a psychologist that is familiar with CF or chronically ill children.

Much luck in getting through to her.

 

[Liza]

Marissa is rebelling against her "machines.

Wow, I can begin to think of how to handle all of this at once. You are a remarkable woman for all you have done and all that you do for your step-daughter. I aplaud you for sticking to it, and making Dad find his courage to do what needs to be done.
<br />
<br />When you say the neb. "flies" across the room, I am guessing you mean the machine since you put it on the floor. I don't see any problem with it being on the floor for her treatments. We would set ours on the carpet so that it wouldn't vibrate when it lost one of the little rubber feet.
<br />
<br />As for the vest, and it's tubing's coming off at different times. I offer this suggestion, although it is more work for you and dad... tell her that if her vest is going to keep malfunctioning like this and they are so expensive to relace that you guys are going have to do manual percussion. And that even though it takes more time to do it, you want her to get the most out of her PT that she can and this is the only way to do it when her vest is acting up like it is.
<br />
<br />Another thought is to talk to her CF docs about the improvement she's made in the last two years since she'd been doing her treatments properly. If that's already been done, and not all docs can get through to them, perhaps she needs to talk with a psychologist that is familiar with CF or chronically ill children.
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<br />Much luck in getting through to her.
<br />
<br />

 

[Diana]

Marissa is rebelling against her "machines.

There are two very seperate issues here that you are coping with. One is the stepmother syndrome which is not easy as no matter how many decisions you make for the love of the child, stepchildren sometimes never really see that you do it for them. It really comes down to the childs personality. The second is the fact that a routine is being imposed onto Marissa which she may not or may not want to understand.

Personally I am a stepmother who like yourself has had to make some tough decisions with my step son (although he does not have CF). The result was that he may have turned out to be a better person because of it, I will never truly get the credit for it from him. I love him and he does love me but for the most part he always felt that I was there to take his father off of him. I ahd to just tell myself that as long as he turned out to be the best he could be that was all I needed.

The fact is that you are not going to be able to back off on the medical decisions as I can tell you are truly concerned and love this child. I do however think that it is just not fair that you do not have the exact same level of tenacity from both biological parents.

So my advice would be persistence, love and explanation to try and encourage Marissa to take care of herself for all the right reasons and perhaps look at some family counselling. I say that because she is at a good age to get to the bottom of her issues right now but if left for another year or so, that ability to mould a child's values starts to disappear - then they become teenagers who can't possibly be wrong about anything. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Oh yeah and lastly pick your battles. Sometime let her get away with the smaller stuff so that when you don't waiver on the bigger stuff she learns to realise the importance of those specific things. Hang in there.

 

[Diana]

Marissa is rebelling against her "machines.

There are two very seperate issues here that you are coping with. One is the stepmother syndrome which is not easy as no matter how many decisions you make for the love of the child, stepchildren sometimes never really see that you do it for them. It really comes down to the childs personality. The second is the fact that a routine is being imposed onto Marissa which she may not or may not want to understand.

Personally I am a stepmother who like yourself has had to make some tough decisions with my step son (although he does not have CF). The result was that he may have turned out to be a better person because of it, I will never truly get the credit for it from him. I love him and he does love me but for the most part he always felt that I was there to take his father off of him. I ahd to just tell myself that as long as he turned out to be the best he could be that was all I needed.

The fact is that you are not going to be able to back off on the medical decisions as I can tell you are truly concerned and love this child. I do however think that it is just not fair that you do not have the exact same level of tenacity from both biological parents.

So my advice would be persistence, love and explanation to try and encourage Marissa to take care of herself for all the right reasons and perhaps look at some family counselling. I say that because she is at a good age to get to the bottom of her issues right now but if left for another year or so, that ability to mould a child's values starts to disappear - then they become teenagers who can't possibly be wrong about anything. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Oh yeah and lastly pick your battles. Sometime let her get away with the smaller stuff so that when you don't waiver on the bigger stuff she learns to realise the importance of those specific things. Hang in there.

 

[Diana]

Marissa is rebelling against her "machines.

There are two very seperate issues here that you are coping with. One is the stepmother syndrome which is not easy as no matter how many decisions you make for the love of the child, stepchildren sometimes never really see that you do it for them. It really comes down to the childs personality. The second is the fact that a routine is being imposed onto Marissa which she may not or may not want to understand.

Personally I am a stepmother who like yourself has had to make some tough decisions with my step son (although he does not have CF). The result was that he may have turned out to be a better person because of it, I will never truly get the credit for it from him. I love him and he does love me but for the most part he always felt that I was there to take his father off of him. I ahd to just tell myself that as long as he turned out to be the best he could be that was all I needed.

The fact is that you are not going to be able to back off on the medical decisions as I can tell you are truly concerned and love this child. I do however think that it is just not fair that you do not have the exact same level of tenacity from both biological parents.

So my advice would be persistence, love and explanation to try and encourage Marissa to take care of herself for all the right reasons and perhaps look at some family counselling. I say that because she is at a good age to get to the bottom of her issues right now but if left for another year or so, that ability to mould a child's values starts to disappear - then they become teenagers who can't possibly be wrong about anything. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Oh yeah and lastly pick your battles. Sometime let her get away with the smaller stuff so that when you don't waiver on the bigger stuff she learns to realise the importance of those specific things. Hang in there.

 

[Diana]

Marissa is rebelling against her "machines.

There are two very seperate issues here that you are coping with. One is the stepmother syndrome which is not easy as no matter how many decisions you make for the love of the child, stepchildren sometimes never really see that you do it for them. It really comes down to the childs personality. The second is the fact that a routine is being imposed onto Marissa which she may not or may not want to understand.

Personally I am a stepmother who like yourself has had to make some tough decisions with my step son (although he does not have CF). The result was that he may have turned out to be a better person because of it, I will never truly get the credit for it from him. I love him and he does love me but for the most part he always felt that I was there to take his father off of him. I ahd to just tell myself that as long as he turned out to be the best he could be that was all I needed.

The fact is that you are not going to be able to back off on the medical decisions as I can tell you are truly concerned and love this child. I do however think that it is just not fair that you do not have the exact same level of tenacity from both biological parents.

So my advice would be persistence, love and explanation to try and encourage Marissa to take care of herself for all the right reasons and perhaps look at some family counselling. I say that because she is at a good age to get to the bottom of her issues right now but if left for another year or so, that ability to mould a child's values starts to disappear - then they become teenagers who can't possibly be wrong about anything. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Oh yeah and lastly pick your battles. Sometime let her get away with the smaller stuff so that when you don't waiver on the bigger stuff she learns to realise the importance of those specific things. Hang in there.

 

[Diana]

Marissa is rebelling against her "machines.

There are two very seperate issues here that you are coping with. One is the stepmother syndrome which is not easy as no matter how many decisions you make for the love of the child, stepchildren sometimes never really see that you do it for them. It really comes down to the childs personality. The second is the fact that a routine is being imposed onto Marissa which she may not or may not want to understand.
<br />
<br />Personally I am a stepmother who like yourself has had to make some tough decisions with my step son (although he does not have CF). The result was that he may have turned out to be a better person because of it, I will never truly get the credit for it from him. I love him and he does love me but for the most part he always felt that I was there to take his father off of him. I ahd to just tell myself that as long as he turned out to be the best he could be that was all I needed.
<br />
<br />The fact is that you are not going to be able to back off on the medical decisions as I can tell you are truly concerned and love this child. I do however think that it is just not fair that you do not have the exact same level of tenacity from both biological parents.
<br />
<br />So my advice would be persistence, love and explanation to try and encourage Marissa to take care of herself for all the right reasons and perhaps look at some family counselling. I say that because she is at a good age to get to the bottom of her issues right now but if left for another year or so, that ability to mould a child's values starts to disappear - then they become teenagers who can't possibly be wrong about anything. <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />Oh yeah and lastly pick your battles. Sometime let her get away with the smaller stuff so that when you don't waiver on the bigger stuff she learns to realise the importance of those specific things. Hang in there.
<br />