CF ROUTINES

H

hopesiris

Guest
I am taking the same approach as Nicole. I do my neb in the livingroom watching tv. Last week Amelia noticed my neb cup so I told her "this is mommies neb cup" and let her look at it. My husband brings Amelia into our bedroom when I do my vest. He sits her on my shoulders and we laugh as she gets her "ride" and I play with her tiny feet. We move her away when I huff and cough though-she goes with daddy to another room. Since she is noticing these things as a newborn baby, I think openness will benefit us when it comes time that she asks about my CF.

Amelia does look distressed when I cough loudly/repeatedly and when my husband said something about it I just shrugged my shoulders. Yes, she will know I'm sick (meaning I have CF and need my treatments) but she also sees me exercise and live my life as fully as possible.

You and I are very close in age, both mothers, see the same doctor and do a couple of the same treatments but our health is very different and of course I know I can't advise you on what is best for your little one. I'm basing my approach with Amelia on what my husband and I can manage to do every day, and on our approach to my CF so far.

Bonnie
 
H

hopesiris

Guest
I am taking the same approach as Nicole. I do my neb in the livingroom watching tv. Last week Amelia noticed my neb cup so I told her "this is mommies neb cup" and let her look at it. My husband brings Amelia into our bedroom when I do my vest. He sits her on my shoulders and we laugh as she gets her "ride" and I play with her tiny feet. We move her away when I huff and cough though-she goes with daddy to another room. Since she is noticing these things as a newborn baby, I think openness will benefit us when it comes time that she asks about my CF.

Amelia does look distressed when I cough loudly/repeatedly and when my husband said something about it I just shrugged my shoulders. Yes, she will know I'm sick (meaning I have CF and need my treatments) but she also sees me exercise and live my life as fully as possible.

You and I are very close in age, both mothers, see the same doctor and do a couple of the same treatments but our health is very different and of course I know I can't advise you on what is best for your little one. I'm basing my approach with Amelia on what my husband and I can manage to do every day, and on our approach to my CF so far.

Bonnie
 
H

hopesiris

Guest
I am taking the same approach as Nicole. I do my neb in the livingroom watching tv. Last week Amelia noticed my neb cup so I told her "this is mommies neb cup" and let her look at it. My husband brings Amelia into our bedroom when I do my vest. He sits her on my shoulders and we laugh as she gets her "ride" and I play with her tiny feet. We move her away when I huff and cough though-she goes with daddy to another room. Since she is noticing these things as a newborn baby, I think openness will benefit us when it comes time that she asks about my CF.

Amelia does look distressed when I cough loudly/repeatedly and when my husband said something about it I just shrugged my shoulders. Yes, she will know I'm sick (meaning I have CF and need my treatments) but she also sees me exercise and live my life as fully as possible.

You and I are very close in age, both mothers, see the same doctor and do a couple of the same treatments but our health is very different and of course I know I can't advise you on what is best for your little one. I'm basing my approach with Amelia on what my husband and I can manage to do every day, and on our approach to my CF so far.

Bonnie
 
H

hopesiris

Guest
I am taking the same approach as Nicole. I do my neb in the livingroom watching tv. Last week Amelia noticed my neb cup so I told her "this is mommies neb cup" and let her look at it. My husband brings Amelia into our bedroom when I do my vest. He sits her on my shoulders and we laugh as she gets her "ride" and I play with her tiny feet. We move her away when I huff and cough though-she goes with daddy to another room. Since she is noticing these things as a newborn baby, I think openness will benefit us when it comes time that she asks about my CF.

Amelia does look distressed when I cough loudly/repeatedly and when my husband said something about it I just shrugged my shoulders. Yes, she will know I'm sick (meaning I have CF and need my treatments) but she also sees me exercise and live my life as fully as possible.

You and I are very close in age, both mothers, see the same doctor and do a couple of the same treatments but our health is very different and of course I know I can't advise you on what is best for your little one. I'm basing my approach with Amelia on what my husband and I can manage to do every day, and on our approach to my CF so far.

Bonnie
 
H

hopesiris

Guest
I am taking the same approach as Nicole. I do my neb in the livingroom watching tv. Last week Amelia noticed my neb cup so I told her "this is mommies neb cup" and let her look at it. My husband brings Amelia into our bedroom when I do my vest. He sits her on my shoulders and we laugh as she gets her "ride" and I play with her tiny feet. We move her away when I huff and cough though-she goes with daddy to another room. Since she is noticing these things as a newborn baby, I think openness will benefit us when it comes time that she asks about my CF.

Amelia does look distressed when I cough loudly/repeatedly and when my husband said something about it I just shrugged my shoulders. Yes, she will know I'm sick (meaning I have CF and need my treatments) but she also sees me exercise and live my life as fully as possible.

You and I are very close in age, both mothers, see the same doctor and do a couple of the same treatments but our health is very different and of course I know I can't advise you on what is best for your little one. I'm basing my approach with Amelia on what my husband and I can manage to do every day, and on our approach to my CF so far.

Bonnie
 

AnD

New member
It is just part of our normal routine around here (though I haven't had to do IVs since AB has been old enough to really ask about them). In the mornings, I do my meds and vest and she gets to watch Elmo or whoever is on, or a video, or she can bring me books during vest time, and we will read, or she can do playdoh, or whatever. She also knows that I can't read to her with my neb in my mouth anymore- books are now longer than a minute and a half, lol.

She used to like to "ride" my vest with me when she was younger, but now I have changed the settings, and she only will sit with me during the low settings <img src=""> .

She knows that I have to take special care of myself, and take my medicines (nebs and pills) so I stay healthy (and she has to take her vitamin <img src=""> ). She also knows that I do all the nebs and vest because my lungs need more help to work well than other people.

It's all just part of our day in, day out routine, but I'm not sure that she has caught on that all the other mommies don't do this stuff too yet (though I have shown her on the internet a time or two that there are other people do treatments like me, and she was amazed- so I think she has noticed that her mom does things a bit differently in a day- but she also knows that her mom is almost chronically late, unlike most other moms... <img src=""> ).

She knows (and enforces! haha) that sick people aren't allowed over at our house "Grandpa, you can come over when you are better", lol.

So, basically, we also are taking the same approach as Nicole- the unknown<i> is </i>scarier IMHO and experience, especially when adults were secretive about it. I am not embarrassed about doing my treatments in front of people - especially my family (I have developed a "take me or leave me" approach to people in my "old age" when it comes to my cf, lol) so I don't want to give her the impression that my cf or my treatments are something to hide, or be embarrassed or overly concerned about since it happens everyday. Honestly, it never even crossed my mind to hide any of it from her...kids notice so much...I just wanted to be prepared when she asked a question - an ongoing thing at this age, lol.
 

AnD

New member
It is just part of our normal routine around here (though I haven't had to do IVs since AB has been old enough to really ask about them). In the mornings, I do my meds and vest and she gets to watch Elmo or whoever is on, or a video, or she can bring me books during vest time, and we will read, or she can do playdoh, or whatever. She also knows that I can't read to her with my neb in my mouth anymore- books are now longer than a minute and a half, lol.

She used to like to "ride" my vest with me when she was younger, but now I have changed the settings, and she only will sit with me during the low settings <img src=""> .

She knows that I have to take special care of myself, and take my medicines (nebs and pills) so I stay healthy (and she has to take her vitamin <img src=""> ). She also knows that I do all the nebs and vest because my lungs need more help to work well than other people.

It's all just part of our day in, day out routine, but I'm not sure that she has caught on that all the other mommies don't do this stuff too yet (though I have shown her on the internet a time or two that there are other people do treatments like me, and she was amazed- so I think she has noticed that her mom does things a bit differently in a day- but she also knows that her mom is almost chronically late, unlike most other moms... <img src=""> ).

She knows (and enforces! haha) that sick people aren't allowed over at our house "Grandpa, you can come over when you are better", lol.

So, basically, we also are taking the same approach as Nicole- the unknown<i> is </i>scarier IMHO and experience, especially when adults were secretive about it. I am not embarrassed about doing my treatments in front of people - especially my family (I have developed a "take me or leave me" approach to people in my "old age" when it comes to my cf, lol) so I don't want to give her the impression that my cf or my treatments are something to hide, or be embarrassed or overly concerned about since it happens everyday. Honestly, it never even crossed my mind to hide any of it from her...kids notice so much...I just wanted to be prepared when she asked a question - an ongoing thing at this age, lol.
 

AnD

New member
It is just part of our normal routine around here (though I haven't had to do IVs since AB has been old enough to really ask about them). In the mornings, I do my meds and vest and she gets to watch Elmo or whoever is on, or a video, or she can bring me books during vest time, and we will read, or she can do playdoh, or whatever. She also knows that I can't read to her with my neb in my mouth anymore- books are now longer than a minute and a half, lol.

She used to like to "ride" my vest with me when she was younger, but now I have changed the settings, and she only will sit with me during the low settings <img src=""> .

She knows that I have to take special care of myself, and take my medicines (nebs and pills) so I stay healthy (and she has to take her vitamin <img src=""> ). She also knows that I do all the nebs and vest because my lungs need more help to work well than other people.

It's all just part of our day in, day out routine, but I'm not sure that she has caught on that all the other mommies don't do this stuff too yet (though I have shown her on the internet a time or two that there are other people do treatments like me, and she was amazed- so I think she has noticed that her mom does things a bit differently in a day- but she also knows that her mom is almost chronically late, unlike most other moms... <img src=""> ).

She knows (and enforces! haha) that sick people aren't allowed over at our house "Grandpa, you can come over when you are better", lol.

So, basically, we also are taking the same approach as Nicole- the unknown<i> is </i>scarier IMHO and experience, especially when adults were secretive about it. I am not embarrassed about doing my treatments in front of people - especially my family (I have developed a "take me or leave me" approach to people in my "old age" when it comes to my cf, lol) so I don't want to give her the impression that my cf or my treatments are something to hide, or be embarrassed or overly concerned about since it happens everyday. Honestly, it never even crossed my mind to hide any of it from her...kids notice so much...I just wanted to be prepared when she asked a question - an ongoing thing at this age, lol.
 

AnD

New member
It is just part of our normal routine around here (though I haven't had to do IVs since AB has been old enough to really ask about them). In the mornings, I do my meds and vest and she gets to watch Elmo or whoever is on, or a video, or she can bring me books during vest time, and we will read, or she can do playdoh, or whatever. She also knows that I can't read to her with my neb in my mouth anymore- books are now longer than a minute and a half, lol.

She used to like to "ride" my vest with me when she was younger, but now I have changed the settings, and she only will sit with me during the low settings <img src=""> .

She knows that I have to take special care of myself, and take my medicines (nebs and pills) so I stay healthy (and she has to take her vitamin <img src=""> ). She also knows that I do all the nebs and vest because my lungs need more help to work well than other people.

It's all just part of our day in, day out routine, but I'm not sure that she has caught on that all the other mommies don't do this stuff too yet (though I have shown her on the internet a time or two that there are other people do treatments like me, and she was amazed- so I think she has noticed that her mom does things a bit differently in a day- but she also knows that her mom is almost chronically late, unlike most other moms... <img src=""> ).

She knows (and enforces! haha) that sick people aren't allowed over at our house "Grandpa, you can come over when you are better", lol.

So, basically, we also are taking the same approach as Nicole- the unknown<i> is </i>scarier IMHO and experience, especially when adults were secretive about it. I am not embarrassed about doing my treatments in front of people - especially my family (I have developed a "take me or leave me" approach to people in my "old age" when it comes to my cf, lol) so I don't want to give her the impression that my cf or my treatments are something to hide, or be embarrassed or overly concerned about since it happens everyday. Honestly, it never even crossed my mind to hide any of it from her...kids notice so much...I just wanted to be prepared when she asked a question - an ongoing thing at this age, lol.
 

AnD

New member
It is just part of our normal routine around here (though I haven't had to do IVs since AB has been old enough to really ask about them). In the mornings, I do my meds and vest and she gets to watch Elmo or whoever is on, or a video, or she can bring me books during vest time, and we will read, or she can do playdoh, or whatever. She also knows that I can't read to her with my neb in my mouth anymore- books are now longer than a minute and a half, lol.

She used to like to "ride" my vest with me when she was younger, but now I have changed the settings, and she only will sit with me during the low settings <img src=""> .

She knows that I have to take special care of myself, and take my medicines (nebs and pills) so I stay healthy (and she has to take her vitamin <img src=""> ). She also knows that I do all the nebs and vest because my lungs need more help to work well than other people.

It's all just part of our day in, day out routine, but I'm not sure that she has caught on that all the other mommies don't do this stuff too yet (though I have shown her on the internet a time or two that there are other people do treatments like me, and she was amazed- so I think she has noticed that her mom does things a bit differently in a day- but she also knows that her mom is almost chronically late, unlike most other moms... <img src=""> ).

She knows (and enforces! haha) that sick people aren't allowed over at our house "Grandpa, you can come over when you are better", lol.

So, basically, we also are taking the same approach as Nicole- the unknown<i> is </i>scarier IMHO and experience, especially when adults were secretive about it. I am not embarrassed about doing my treatments in front of people - especially my family (I have developed a "take me or leave me" approach to people in my "old age" when it comes to my cf, lol) so I don't want to give her the impression that my cf or my treatments are something to hide, or be embarrassed or overly concerned about since it happens everyday. Honestly, it never even crossed my mind to hide any of it from her...kids notice so much...I just wanted to be prepared when she asked a question - an ongoing thing at this age, lol.
 

Emily65Roses

New member
I'm no parent, as you know Mel, but my instinct would be to do it whenever you need. She doesn't need more reminders, no. But I'm sure she's aware of it at all times anyway. And the more "normal" you make it, the better. Make it like doing dishes or brushing your teeth. It's just part of your life. You know?
 

Emily65Roses

New member
I'm no parent, as you know Mel, but my instinct would be to do it whenever you need. She doesn't need more reminders, no. But I'm sure she's aware of it at all times anyway. And the more "normal" you make it, the better. Make it like doing dishes or brushing your teeth. It's just part of your life. You know?
 

Emily65Roses

New member
I'm no parent, as you know Mel, but my instinct would be to do it whenever you need. She doesn't need more reminders, no. But I'm sure she's aware of it at all times anyway. And the more "normal" you make it, the better. Make it like doing dishes or brushing your teeth. It's just part of your life. You know?
 

Emily65Roses

New member
I'm no parent, as you know Mel, but my instinct would be to do it whenever you need. She doesn't need more reminders, no. But I'm sure she's aware of it at all times anyway. And the more "normal" you make it, the better. Make it like doing dishes or brushing your teeth. It's just part of your life. You know?
 

Emily65Roses

New member
I'm no parent, as you know Mel, but my instinct would be to do it whenever you need. She doesn't need more reminders, no. But I'm sure she's aware of it at all times anyway. And the more "normal" you make it, the better. Make it like doing dishes or brushing your teeth. It's just part of your life. You know?
 
T

TonyaH

Guest
My friend Mel,
We've discussed this a number of times and you know my thoughts on the subject. I thought I would mention my background for some of the other parents involved in the conversation.

My mom had CF..well, undiagnosed, but had bronchiectasis, aspergillosis, etc. Always responded negatively on a sweat test, but responded favorably to CF treatments. When my son was diagnosed with Cf that was the last clue we needed to officially say she had CF.

Whew, with that being said..

Kids of parents with chronic illness are smart...I mean, they pick up on everything. If you aren't as honest as you can be with them (for their age), they are going to worry and make the situation worse in their mind than it has to be. Making your treatment and therapy part of your daily life will ease a lot of concern that your child may have.

Now, as a parent, I understand the need to protect your child from things that might hurt them. I certainly cannot put myself in your shoes, but as a grown child of a CF mom, I will always vote for inclusion and explanation appropriate for the age of the child.

Did it hurt to have a mom who was sick? Absolutely. Did I want to protect her and take the pain away? Absolutely. But I wouldn't have traded having her as my mom for anything in the world. Cf or no Cf. Dealing with her illness made me a stronger person, just as dealing with Andrew's CF now is making me a stronger person. Looking back I would not have wanted her treatments hidden from me. Some of my fondest memories are sitting up with her at night talking while her IVs dripped. We used to have PJ parties in the living room! She was the most wonderful woman in the world.

You are the most wonderful people in your children's worlds!
 
T

TonyaH

Guest
My friend Mel,
We've discussed this a number of times and you know my thoughts on the subject. I thought I would mention my background for some of the other parents involved in the conversation.

My mom had CF..well, undiagnosed, but had bronchiectasis, aspergillosis, etc. Always responded negatively on a sweat test, but responded favorably to CF treatments. When my son was diagnosed with Cf that was the last clue we needed to officially say she had CF.

Whew, with that being said..

Kids of parents with chronic illness are smart...I mean, they pick up on everything. If you aren't as honest as you can be with them (for their age), they are going to worry and make the situation worse in their mind than it has to be. Making your treatment and therapy part of your daily life will ease a lot of concern that your child may have.

Now, as a parent, I understand the need to protect your child from things that might hurt them. I certainly cannot put myself in your shoes, but as a grown child of a CF mom, I will always vote for inclusion and explanation appropriate for the age of the child.

Did it hurt to have a mom who was sick? Absolutely. Did I want to protect her and take the pain away? Absolutely. But I wouldn't have traded having her as my mom for anything in the world. Cf or no Cf. Dealing with her illness made me a stronger person, just as dealing with Andrew's CF now is making me a stronger person. Looking back I would not have wanted her treatments hidden from me. Some of my fondest memories are sitting up with her at night talking while her IVs dripped. We used to have PJ parties in the living room! She was the most wonderful woman in the world.

You are the most wonderful people in your children's worlds!
 
T

TonyaH

Guest
My friend Mel,
We've discussed this a number of times and you know my thoughts on the subject. I thought I would mention my background for some of the other parents involved in the conversation.

My mom had CF..well, undiagnosed, but had bronchiectasis, aspergillosis, etc. Always responded negatively on a sweat test, but responded favorably to CF treatments. When my son was diagnosed with Cf that was the last clue we needed to officially say she had CF.

Whew, with that being said..

Kids of parents with chronic illness are smart...I mean, they pick up on everything. If you aren't as honest as you can be with them (for their age), they are going to worry and make the situation worse in their mind than it has to be. Making your treatment and therapy part of your daily life will ease a lot of concern that your child may have.

Now, as a parent, I understand the need to protect your child from things that might hurt them. I certainly cannot put myself in your shoes, but as a grown child of a CF mom, I will always vote for inclusion and explanation appropriate for the age of the child.

Did it hurt to have a mom who was sick? Absolutely. Did I want to protect her and take the pain away? Absolutely. But I wouldn't have traded having her as my mom for anything in the world. Cf or no Cf. Dealing with her illness made me a stronger person, just as dealing with Andrew's CF now is making me a stronger person. Looking back I would not have wanted her treatments hidden from me. Some of my fondest memories are sitting up with her at night talking while her IVs dripped. We used to have PJ parties in the living room! She was the most wonderful woman in the world.

You are the most wonderful people in your children's worlds!
 
T

TonyaH

Guest
My friend Mel,
We've discussed this a number of times and you know my thoughts on the subject. I thought I would mention my background for some of the other parents involved in the conversation.

My mom had CF..well, undiagnosed, but had bronchiectasis, aspergillosis, etc. Always responded negatively on a sweat test, but responded favorably to CF treatments. When my son was diagnosed with Cf that was the last clue we needed to officially say she had CF.

Whew, with that being said..

Kids of parents with chronic illness are smart...I mean, they pick up on everything. If you aren't as honest as you can be with them (for their age), they are going to worry and make the situation worse in their mind than it has to be. Making your treatment and therapy part of your daily life will ease a lot of concern that your child may have.

Now, as a parent, I understand the need to protect your child from things that might hurt them. I certainly cannot put myself in your shoes, but as a grown child of a CF mom, I will always vote for inclusion and explanation appropriate for the age of the child.

Did it hurt to have a mom who was sick? Absolutely. Did I want to protect her and take the pain away? Absolutely. But I wouldn't have traded having her as my mom for anything in the world. Cf or no Cf. Dealing with her illness made me a stronger person, just as dealing with Andrew's CF now is making me a stronger person. Looking back I would not have wanted her treatments hidden from me. Some of my fondest memories are sitting up with her at night talking while her IVs dripped. We used to have PJ parties in the living room! She was the most wonderful woman in the world.

You are the most wonderful people in your children's worlds!
 
T

TonyaH

Guest
My friend Mel,
We've discussed this a number of times and you know my thoughts on the subject. I thought I would mention my background for some of the other parents involved in the conversation.

My mom had CF..well, undiagnosed, but had bronchiectasis, aspergillosis, etc. Always responded negatively on a sweat test, but responded favorably to CF treatments. When my son was diagnosed with Cf that was the last clue we needed to officially say she had CF.

Whew, with that being said..

Kids of parents with chronic illness are smart...I mean, they pick up on everything. If you aren't as honest as you can be with them (for their age), they are going to worry and make the situation worse in their mind than it has to be. Making your treatment and therapy part of your daily life will ease a lot of concern that your child may have.

Now, as a parent, I understand the need to protect your child from things that might hurt them. I certainly cannot put myself in your shoes, but as a grown child of a CF mom, I will always vote for inclusion and explanation appropriate for the age of the child.

Did it hurt to have a mom who was sick? Absolutely. Did I want to protect her and take the pain away? Absolutely. But I wouldn't have traded having her as my mom for anything in the world. Cf or no Cf. Dealing with her illness made me a stronger person, just as dealing with Andrew's CF now is making me a stronger person. Looking back I would not have wanted her treatments hidden from me. Some of my fondest memories are sitting up with her at night talking while her IVs dripped. We used to have PJ parties in the living room! She was the most wonderful woman in the world.

You are the most wonderful people in your children's worlds!
 
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