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TonyaH
12-05-2009, 11:49 AM
Hey there,

I guess this question goes to both adults as well as parents who have children old enough to have gone through this already.

I have always made Andrew a part of his CF care. From an early age he could tell you what all of his meds are for, when he takes them, etc. He is 11 years old, turning 12 in January, and as of now I still lay all of his orals and nebs out for him every day. Lately he has been surprising me by starting his nebs himself. He seems to be doing a fine job, but I worry about things like cleanliness, and if he's really huffing hard enough after his vest, etc etc. So, when I realize he has started, I usually drop what I'm doing and stay close by so I can make sure he does everything in the right order, and does it correctly, without him feeling that I'm "keeping tabs" on him.

Can you share your story of independence?..How old were you when you were resonsible for all of your own nebs,,how old you were when you felt your mom allowed you to do your meds each day? I'm not planning to walk away from his treatment. He still needs guidance. But I want to make sure I'm letting him take these steps at the right age. I like the responsibilty I'm seeing, and don't want to squelch. Also, any tips on how I can make him feel independent but still be watchful and aware of everything he is doing?

Thank you!!!

TonyaH
12-05-2009, 11:49 AM
Hey there,

I guess this question goes to both adults as well as parents who have children old enough to have gone through this already.

I have always made Andrew a part of his CF care. From an early age he could tell you what all of his meds are for, when he takes them, etc. He is 11 years old, turning 12 in January, and as of now I still lay all of his orals and nebs out for him every day. Lately he has been surprising me by starting his nebs himself. He seems to be doing a fine job, but I worry about things like cleanliness, and if he's really huffing hard enough after his vest, etc etc. So, when I realize he has started, I usually drop what I'm doing and stay close by so I can make sure he does everything in the right order, and does it correctly, without him feeling that I'm "keeping tabs" on him.

Can you share your story of independence?..How old were you when you were resonsible for all of your own nebs,,how old you were when you felt your mom allowed you to do your meds each day? I'm not planning to walk away from his treatment. He still needs guidance. But I want to make sure I'm letting him take these steps at the right age. I like the responsibilty I'm seeing, and don't want to squelch. Also, any tips on how I can make him feel independent but still be watchful and aware of everything he is doing?

Thank you!!!

TonyaH
12-05-2009, 11:49 AM
Hey there,

I guess this question goes to both adults as well as parents who have children old enough to have gone through this already.

I have always made Andrew a part of his CF care. From an early age he could tell you what all of his meds are for, when he takes them, etc. He is 11 years old, turning 12 in January, and as of now I still lay all of his orals and nebs out for him every day. Lately he has been surprising me by starting his nebs himself. He seems to be doing a fine job, but I worry about things like cleanliness, and if he's really huffing hard enough after his vest, etc etc. So, when I realize he has started, I usually drop what I'm doing and stay close by so I can make sure he does everything in the right order, and does it correctly, without him feeling that I'm "keeping tabs" on him.

Can you share your story of independence?..How old were you when you were resonsible for all of your own nebs,,how old you were when you felt your mom allowed you to do your meds each day? I'm not planning to walk away from his treatment. He still needs guidance. But I want to make sure I'm letting him take these steps at the right age. I like the responsibilty I'm seeing, and don't want to squelch. Also, any tips on how I can make him feel independent but still be watchful and aware of everything he is doing?

Thank you!!!

TonyaH
12-05-2009, 11:49 AM
Hey there,

I guess this question goes to both adults as well as parents who have children old enough to have gone through this already.

I have always made Andrew a part of his CF care. From an early age he could tell you what all of his meds are for, when he takes them, etc. He is 11 years old, turning 12 in January, and as of now I still lay all of his orals and nebs out for him every day. Lately he has been surprising me by starting his nebs himself. He seems to be doing a fine job, but I worry about things like cleanliness, and if he's really huffing hard enough after his vest, etc etc. So, when I realize he has started, I usually drop what I'm doing and stay close by so I can make sure he does everything in the right order, and does it correctly, without him feeling that I'm "keeping tabs" on him.

Can you share your story of independence?..How old were you when you were resonsible for all of your own nebs,,how old you were when you felt your mom allowed you to do your meds each day? I'm not planning to walk away from his treatment. He still needs guidance. But I want to make sure I'm letting him take these steps at the right age. I like the responsibilty I'm seeing, and don't want to squelch. Also, any tips on how I can make him feel independent but still be watchful and aware of everything he is doing?

Thank you!!!

TonyaH
12-05-2009, 11:49 AM
Hey there,
<br />
<br />I guess this question goes to both adults as well as parents who have children old enough to have gone through this already.
<br />
<br />I have always made Andrew a part of his CF care. From an early age he could tell you what all of his meds are for, when he takes them, etc. He is 11 years old, turning 12 in January, and as of now I still lay all of his orals and nebs out for him every day. Lately he has been surprising me by starting his nebs himself. He seems to be doing a fine job, but I worry about things like cleanliness, and if he's really huffing hard enough after his vest, etc etc. So, when I realize he has started, I usually drop what I'm doing and stay close by so I can make sure he does everything in the right order, and does it correctly, without him feeling that I'm "keeping tabs" on him.
<br />
<br />Can you share your story of independence?..How old were you when you were resonsible for all of your own nebs,,how old you were when you felt your mom allowed you to do your meds each day? I'm not planning to walk away from his treatment. He still needs guidance. But I want to make sure I'm letting him take these steps at the right age. I like the responsibilty I'm seeing, and don't want to squelch. Also, any tips on how I can make him feel independent but still be watchful and aware of everything he is doing?
<br />
<br />Thank you!!!

amysmom
12-05-2009, 01:55 PM
It sounds like you're doing a great job and already done alot of things right!

I did the same thing with our daughter (she's 28 years old now) - stayed close to keep an eye on her but slowly had her take over all her treatments and medication except for washing the nebs, which I did until she left for college.

The night before she turned 13 though, she told me she wasn't going to do any more treatments or take any medicine. (ugh) After explaining to her all of the consequences, she still wasn't budging. So we took away a trip she was going on with a friend to Palm Springs for 2 weeks. (Hated doing that.)

It worked though but at that point I realized I was going to have to change things so that we wouldn't be battling CF at the same time she was starting the typical teenage rebellion stuff.

After discussing this with her doctor, he and I agreed that Amy would be talking to him directly about her medications and treatments. Any (rebellion) problems she had, she would now call him and he would be the one she'd argue with instead of us.

Also, when she went to her appointments, she would go in the room alone. Her doctor would call me later and fill me in on everything.

This did two things - eliminated CF as a rebelling tool and also continued her towards the ultimate goal of having her completely independent (and responsible) for everything CF by the time she was 18 years old.

It worked like magic! Amy called her doctor only once complaining about something she didn't want to do. They 'negotiated' a solution. It fit perfectly for a teenager who thought she could run her own life anyway!

amysmom
12-05-2009, 01:55 PM
It sounds like you're doing a great job and already done alot of things right!

I did the same thing with our daughter (she's 28 years old now) - stayed close to keep an eye on her but slowly had her take over all her treatments and medication except for washing the nebs, which I did until she left for college.

The night before she turned 13 though, she told me she wasn't going to do any more treatments or take any medicine. (ugh) After explaining to her all of the consequences, she still wasn't budging. So we took away a trip she was going on with a friend to Palm Springs for 2 weeks. (Hated doing that.)

It worked though but at that point I realized I was going to have to change things so that we wouldn't be battling CF at the same time she was starting the typical teenage rebellion stuff.

After discussing this with her doctor, he and I agreed that Amy would be talking to him directly about her medications and treatments. Any (rebellion) problems she had, she would now call him and he would be the one she'd argue with instead of us.

Also, when she went to her appointments, she would go in the room alone. Her doctor would call me later and fill me in on everything.

This did two things - eliminated CF as a rebelling tool and also continued her towards the ultimate goal of having her completely independent (and responsible) for everything CF by the time she was 18 years old.

It worked like magic! Amy called her doctor only once complaining about something she didn't want to do. They 'negotiated' a solution. It fit perfectly for a teenager who thought she could run her own life anyway!

amysmom
12-05-2009, 01:55 PM
It sounds like you're doing a great job and already done alot of things right!

I did the same thing with our daughter (she's 28 years old now) - stayed close to keep an eye on her but slowly had her take over all her treatments and medication except for washing the nebs, which I did until she left for college.

The night before she turned 13 though, she told me she wasn't going to do any more treatments or take any medicine. (ugh) After explaining to her all of the consequences, she still wasn't budging. So we took away a trip she was going on with a friend to Palm Springs for 2 weeks. (Hated doing that.)

It worked though but at that point I realized I was going to have to change things so that we wouldn't be battling CF at the same time she was starting the typical teenage rebellion stuff.

After discussing this with her doctor, he and I agreed that Amy would be talking to him directly about her medications and treatments. Any (rebellion) problems she had, she would now call him and he would be the one she'd argue with instead of us.

Also, when she went to her appointments, she would go in the room alone. Her doctor would call me later and fill me in on everything.

This did two things - eliminated CF as a rebelling tool and also continued her towards the ultimate goal of having her completely independent (and responsible) for everything CF by the time she was 18 years old.

It worked like magic! Amy called her doctor only once complaining about something she didn't want to do. They 'negotiated' a solution. It fit perfectly for a teenager who thought she could run her own life anyway!

amysmom
12-05-2009, 01:55 PM
It sounds like you're doing a great job and already done alot of things right!

I did the same thing with our daughter (she's 28 years old now) - stayed close to keep an eye on her but slowly had her take over all her treatments and medication except for washing the nebs, which I did until she left for college.

The night before she turned 13 though, she told me she wasn't going to do any more treatments or take any medicine. (ugh) After explaining to her all of the consequences, she still wasn't budging. So we took away a trip she was going on with a friend to Palm Springs for 2 weeks. (Hated doing that.)

It worked though but at that point I realized I was going to have to change things so that we wouldn't be battling CF at the same time she was starting the typical teenage rebellion stuff.

After discussing this with her doctor, he and I agreed that Amy would be talking to him directly about her medications and treatments. Any (rebellion) problems she had, she would now call him and he would be the one she'd argue with instead of us.

Also, when she went to her appointments, she would go in the room alone. Her doctor would call me later and fill me in on everything.

This did two things - eliminated CF as a rebelling tool and also continued her towards the ultimate goal of having her completely independent (and responsible) for everything CF by the time she was 18 years old.

It worked like magic! Amy called her doctor only once complaining about something she didn't want to do. They 'negotiated' a solution. It fit perfectly for a teenager who thought she could run her own life anyway!

amysmom
12-05-2009, 01:55 PM
It sounds like you're doing a great job and already done alot of things right!
<br />
<br />I did the same thing with our daughter (she's 28 years old now) - stayed close to keep an eye on her but slowly had her take over all her treatments and medication except for washing the nebs, which I did until she left for college.
<br />
<br />The night before she turned 13 though, she told me she wasn't going to do any more treatments or take any medicine. (ugh) After explaining to her all of the consequences, she still wasn't budging. So we took away a trip she was going on with a friend to Palm Springs for 2 weeks. (Hated doing that.)
<br />
<br />It worked though but at that point I realized I was going to have to change things so that we wouldn't be battling CF at the same time she was starting the typical teenage rebellion stuff.
<br />
<br />After discussing this with her doctor, he and I agreed that Amy would be talking to him directly about her medications and treatments. Any (rebellion) problems she had, she would now call him and he would be the one she'd argue with instead of us.
<br />
<br />Also, when she went to her appointments, she would go in the room alone. Her doctor would call me later and fill me in on everything.
<br />
<br />This did two things - eliminated CF as a rebelling tool and also continued her towards the ultimate goal of having her completely independent (and responsible) for everything CF by the time she was 18 years old.
<br />
<br />It worked like magic! Amy called her doctor only once complaining about something she didn't want to do. They 'negotiated' a solution. It fit perfectly for a teenager who thought she could run her own life anyway!
<br />
<br />

NYCLawGirl
12-05-2009, 01:59 PM
hi there,

your approach sounds perfect to me. make yourself somewhat available and keep a bit of an eye on him, but don't let him feel as though you don't trust him with his meds or that you're "hovering" over him. i started taking control of my meds entirely right around his age, and then gradually was also given responsibility for things like renewals (that was more like early high school) and picking up my own local scripts (once i had a car). i'm positive that my parents "watched" me for a while after each of these steps, but i wasn't really aware of it. they also encouraged me to track my treatments, etc, at first. i used paper (i'm so old!) but i think cfvoice.com has an awesome treatment tracker function.

by the time i was 14 or so i kept my treatment machines in my room and my orals in my bathroom and did them completely alone, although i mixed nebs in the kitchen where my meds/cups were. i think i was a tiny bit older when my parents stopped saying things like "do your treatment now" -- that probably happened about the same time as I started going to bed AFTER my parents! i know that by the time i left for college i was completely independent.

i will admit that as a teen i "experimented" a bit with skipping treatments, stopping nebs before they were done if i was tired, not really huffing, etc. i think many (not all) cfers kind of go through that. my parents solved this problem by having my doctor and RT talk to me alone at clinic, so that they wouldn't be "nagging" and i would see how important that sort of stuff really was. i think your son might benefit from this too -- maybe next time you're at clinic arrange for his doctor to see him "man to man" without you in the room (oh, the grown up feeling of that talk with the doctor without mom!) and explain that he's starting to take over his own treatments and that this is a big step and one that he should take pride in doing well, and also sort of go over proper cleaning/huffing/etc techniques just as a helpful refresher. the conversation will simultaneously acknowledge your son's new responsibility for himself and how proud you are of him taking that step, while still reinforcing that proper technique is important and the "adults" are going to be "helping him out" for now as he makes the transition. afterward you could take him out for lunch or a treat and ask him to tell you about the discussion and it would give you a chance to voice your support and agreement with the doctor. just a thought.

good luck and congrats on your proactive and responsible young man!

NYCLawGirl
12-05-2009, 01:59 PM
hi there,

your approach sounds perfect to me. make yourself somewhat available and keep a bit of an eye on him, but don't let him feel as though you don't trust him with his meds or that you're "hovering" over him. i started taking control of my meds entirely right around his age, and then gradually was also given responsibility for things like renewals (that was more like early high school) and picking up my own local scripts (once i had a car). i'm positive that my parents "watched" me for a while after each of these steps, but i wasn't really aware of it. they also encouraged me to track my treatments, etc, at first. i used paper (i'm so old!) but i think cfvoice.com has an awesome treatment tracker function.

by the time i was 14 or so i kept my treatment machines in my room and my orals in my bathroom and did them completely alone, although i mixed nebs in the kitchen where my meds/cups were. i think i was a tiny bit older when my parents stopped saying things like "do your treatment now" -- that probably happened about the same time as I started going to bed AFTER my parents! i know that by the time i left for college i was completely independent.

i will admit that as a teen i "experimented" a bit with skipping treatments, stopping nebs before they were done if i was tired, not really huffing, etc. i think many (not all) cfers kind of go through that. my parents solved this problem by having my doctor and RT talk to me alone at clinic, so that they wouldn't be "nagging" and i would see how important that sort of stuff really was. i think your son might benefit from this too -- maybe next time you're at clinic arrange for his doctor to see him "man to man" without you in the room (oh, the grown up feeling of that talk with the doctor without mom!) and explain that he's starting to take over his own treatments and that this is a big step and one that he should take pride in doing well, and also sort of go over proper cleaning/huffing/etc techniques just as a helpful refresher. the conversation will simultaneously acknowledge your son's new responsibility for himself and how proud you are of him taking that step, while still reinforcing that proper technique is important and the "adults" are going to be "helping him out" for now as he makes the transition. afterward you could take him out for lunch or a treat and ask him to tell you about the discussion and it would give you a chance to voice your support and agreement with the doctor. just a thought.

good luck and congrats on your proactive and responsible young man!

NYCLawGirl
12-05-2009, 01:59 PM
hi there,

your approach sounds perfect to me. make yourself somewhat available and keep a bit of an eye on him, but don't let him feel as though you don't trust him with his meds or that you're "hovering" over him. i started taking control of my meds entirely right around his age, and then gradually was also given responsibility for things like renewals (that was more like early high school) and picking up my own local scripts (once i had a car). i'm positive that my parents "watched" me for a while after each of these steps, but i wasn't really aware of it. they also encouraged me to track my treatments, etc, at first. i used paper (i'm so old!) but i think cfvoice.com has an awesome treatment tracker function.

by the time i was 14 or so i kept my treatment machines in my room and my orals in my bathroom and did them completely alone, although i mixed nebs in the kitchen where my meds/cups were. i think i was a tiny bit older when my parents stopped saying things like "do your treatment now" -- that probably happened about the same time as I started going to bed AFTER my parents! i know that by the time i left for college i was completely independent.

i will admit that as a teen i "experimented" a bit with skipping treatments, stopping nebs before they were done if i was tired, not really huffing, etc. i think many (not all) cfers kind of go through that. my parents solved this problem by having my doctor and RT talk to me alone at clinic, so that they wouldn't be "nagging" and i would see how important that sort of stuff really was. i think your son might benefit from this too -- maybe next time you're at clinic arrange for his doctor to see him "man to man" without you in the room (oh, the grown up feeling of that talk with the doctor without mom!) and explain that he's starting to take over his own treatments and that this is a big step and one that he should take pride in doing well, and also sort of go over proper cleaning/huffing/etc techniques just as a helpful refresher. the conversation will simultaneously acknowledge your son's new responsibility for himself and how proud you are of him taking that step, while still reinforcing that proper technique is important and the "adults" are going to be "helping him out" for now as he makes the transition. afterward you could take him out for lunch or a treat and ask him to tell you about the discussion and it would give you a chance to voice your support and agreement with the doctor. just a thought.

good luck and congrats on your proactive and responsible young man!

NYCLawGirl
12-05-2009, 01:59 PM
hi there,

your approach sounds perfect to me. make yourself somewhat available and keep a bit of an eye on him, but don't let him feel as though you don't trust him with his meds or that you're "hovering" over him. i started taking control of my meds entirely right around his age, and then gradually was also given responsibility for things like renewals (that was more like early high school) and picking up my own local scripts (once i had a car). i'm positive that my parents "watched" me for a while after each of these steps, but i wasn't really aware of it. they also encouraged me to track my treatments, etc, at first. i used paper (i'm so old!) but i think cfvoice.com has an awesome treatment tracker function.

by the time i was 14 or so i kept my treatment machines in my room and my orals in my bathroom and did them completely alone, although i mixed nebs in the kitchen where my meds/cups were. i think i was a tiny bit older when my parents stopped saying things like "do your treatment now" -- that probably happened about the same time as I started going to bed AFTER my parents! i know that by the time i left for college i was completely independent.

i will admit that as a teen i "experimented" a bit with skipping treatments, stopping nebs before they were done if i was tired, not really huffing, etc. i think many (not all) cfers kind of go through that. my parents solved this problem by having my doctor and RT talk to me alone at clinic, so that they wouldn't be "nagging" and i would see how important that sort of stuff really was. i think your son might benefit from this too -- maybe next time you're at clinic arrange for his doctor to see him "man to man" without you in the room (oh, the grown up feeling of that talk with the doctor without mom!) and explain that he's starting to take over his own treatments and that this is a big step and one that he should take pride in doing well, and also sort of go over proper cleaning/huffing/etc techniques just as a helpful refresher. the conversation will simultaneously acknowledge your son's new responsibility for himself and how proud you are of him taking that step, while still reinforcing that proper technique is important and the "adults" are going to be "helping him out" for now as he makes the transition. afterward you could take him out for lunch or a treat and ask him to tell you about the discussion and it would give you a chance to voice your support and agreement with the doctor. just a thought.

good luck and congrats on your proactive and responsible young man!

NYCLawGirl
12-05-2009, 01:59 PM
hi there,
<br />
<br />your approach sounds perfect to me. make yourself somewhat available and keep a bit of an eye on him, but don't let him feel as though you don't trust him with his meds or that you're "hovering" over him. i started taking control of my meds entirely right around his age, and then gradually was also given responsibility for things like renewals (that was more like early high school) and picking up my own local scripts (once i had a car). i'm positive that my parents "watched" me for a while after each of these steps, but i wasn't really aware of it. they also encouraged me to track my treatments, etc, at first. i used paper (i'm so old!) but i think cfvoice.com has an awesome treatment tracker function.
<br />
<br />by the time i was 14 or so i kept my treatment machines in my room and my orals in my bathroom and did them completely alone, although i mixed nebs in the kitchen where my meds/cups were. i think i was a tiny bit older when my parents stopped saying things like "do your treatment now" -- that probably happened about the same time as I started going to bed AFTER my parents! i know that by the time i left for college i was completely independent.
<br />
<br />i will admit that as a teen i "experimented" a bit with skipping treatments, stopping nebs before they were done if i was tired, not really huffing, etc. i think many (not all) cfers kind of go through that. my parents solved this problem by having my doctor and RT talk to me alone at clinic, so that they wouldn't be "nagging" and i would see how important that sort of stuff really was. i think your son might benefit from this too -- maybe next time you're at clinic arrange for his doctor to see him "man to man" without you in the room (oh, the grown up feeling of that talk with the doctor without mom!) and explain that he's starting to take over his own treatments and that this is a big step and one that he should take pride in doing well, and also sort of go over proper cleaning/huffing/etc techniques just as a helpful refresher. the conversation will simultaneously acknowledge your son's new responsibility for himself and how proud you are of him taking that step, while still reinforcing that proper technique is important and the "adults" are going to be "helping him out" for now as he makes the transition. afterward you could take him out for lunch or a treat and ask him to tell you about the discussion and it would give you a chance to voice your support and agreement with the doctor. just a thought.
<br />
<br />good luck and congrats on your proactive and responsible young man!

NYCLawGirl
12-05-2009, 02:03 PM
wow, amysmom, sounds like you and my mom were definitely on the same page! sorry, i just couldn't believe the similarities there. i guess that's why your daughter and i get along even despite her "unpopular" views <img src="i/expressions/face-icon-small-wink.gif" border="0">

NYCLawGirl
12-05-2009, 02:03 PM
wow, amysmom, sounds like you and my mom were definitely on the same page! sorry, i just couldn't believe the similarities there. i guess that's why your daughter and i get along even despite her "unpopular" views <img src="i/expressions/face-icon-small-wink.gif" border="0">

NYCLawGirl
12-05-2009, 02:03 PM
wow, amysmom, sounds like you and my mom were definitely on the same page! sorry, i just couldn't believe the similarities there. i guess that's why your daughter and i get along even despite her "unpopular" views <img src="i/expressions/face-icon-small-wink.gif" border="0">

NYCLawGirl
12-05-2009, 02:03 PM
wow, amysmom, sounds like you and my mom were definitely on the same page! sorry, i just couldn't believe the similarities there. i guess that's why your daughter and i get along even despite her "unpopular" views <img src="i/expressions/face-icon-small-wink.gif" border="0">

NYCLawGirl
12-05-2009, 02:03 PM
wow, amysmom, sounds like you and my mom were definitely on the same page! sorry, i just couldn't believe the similarities there. i guess that's why your daughter and i get along even despite her "unpopular" views <img src="i/expressions/face-icon-small-wink.gif" border="0">

zeeannie
12-05-2009, 08:47 PM
Tonya, your track sounds just like ours. My daughter is 13 now and has been proactive on beginning treatments herself for a few years. Since she became aware of the concept of 'schedules' we had afterschool mapped out to a T. When to have her snack, when to do homework, dinner treatments, etc. Once this became habit, she began doing these things on her own without being reminded. I have now added pills to her set of responsibility. She divvies up all her breakfast/dinner meds in the weekly med dispenser thingie every weekend. We bought tiny baggies (worried that I would trigger some drug bust sting after ordering thousands online!) that she puts her enzymes in for school. She makes a bunch of these up as needed and keeps them in a hidden compartment in her pencil case. Each baggie has enough for lunch so she just has to bring one baggie with her to lunch.

She doesn't always do her huffs at 100% all the time, but she's doing most of them reasonably well, so I don't make it an issue. When she seems overly distracted during vest/huff time I ask her something like "How many sets have you done?" on the pretense that I need to know when she's done so dinner will be ready, but it's just to get her to think about what she's doing without nagging her to pay attention. I am usually cooking dinner nearby, and I can see her, but as far as she's concerned she's on her own.

So far we haven't had to deal with any rebellion. Luckily she's waaaaay healthy, so if that comes up we have some leeway and it won't be a desperate issue to deal with. On the downside of that, she won't realize any immediate consequences for not doing her treatments. She is aware tho of how skipping certain meds affects her, like Zantac, and lactase.

At clinic, we started pulling away from the discussions about two years ago and made sure Sophie did all the talking, listing all current meds, etc. I'm there to clarify or bring anything up that's missed, but otherwise she deals with the docs and nurses. At our Quality Improvement Committee meetings at her clinic, our current project is transitioning to adult care. We're coming up with steps that begin early on to facilitate that transition. A lot depends on the maturity of the child and what they can take on personally, as opposed to age alone. In a couple years, Sophie may start seeing the docs by herself, and I will come in at the end for a recap.

zeeannie
12-05-2009, 08:47 PM
Tonya, your track sounds just like ours. My daughter is 13 now and has been proactive on beginning treatments herself for a few years. Since she became aware of the concept of 'schedules' we had afterschool mapped out to a T. When to have her snack, when to do homework, dinner treatments, etc. Once this became habit, she began doing these things on her own without being reminded. I have now added pills to her set of responsibility. She divvies up all her breakfast/dinner meds in the weekly med dispenser thingie every weekend. We bought tiny baggies (worried that I would trigger some drug bust sting after ordering thousands online!) that she puts her enzymes in for school. She makes a bunch of these up as needed and keeps them in a hidden compartment in her pencil case. Each baggie has enough for lunch so she just has to bring one baggie with her to lunch.

She doesn't always do her huffs at 100% all the time, but she's doing most of them reasonably well, so I don't make it an issue. When she seems overly distracted during vest/huff time I ask her something like "How many sets have you done?" on the pretense that I need to know when she's done so dinner will be ready, but it's just to get her to think about what she's doing without nagging her to pay attention. I am usually cooking dinner nearby, and I can see her, but as far as she's concerned she's on her own.

So far we haven't had to deal with any rebellion. Luckily she's waaaaay healthy, so if that comes up we have some leeway and it won't be a desperate issue to deal with. On the downside of that, she won't realize any immediate consequences for not doing her treatments. She is aware tho of how skipping certain meds affects her, like Zantac, and lactase.

At clinic, we started pulling away from the discussions about two years ago and made sure Sophie did all the talking, listing all current meds, etc. I'm there to clarify or bring anything up that's missed, but otherwise she deals with the docs and nurses. At our Quality Improvement Committee meetings at her clinic, our current project is transitioning to adult care. We're coming up with steps that begin early on to facilitate that transition. A lot depends on the maturity of the child and what they can take on personally, as opposed to age alone. In a couple years, Sophie may start seeing the docs by herself, and I will come in at the end for a recap.

zeeannie
12-05-2009, 08:47 PM
Tonya, your track sounds just like ours. My daughter is 13 now and has been proactive on beginning treatments herself for a few years. Since she became aware of the concept of 'schedules' we had afterschool mapped out to a T. When to have her snack, when to do homework, dinner treatments, etc. Once this became habit, she began doing these things on her own without being reminded. I have now added pills to her set of responsibility. She divvies up all her breakfast/dinner meds in the weekly med dispenser thingie every weekend. We bought tiny baggies (worried that I would trigger some drug bust sting after ordering thousands online!) that she puts her enzymes in for school. She makes a bunch of these up as needed and keeps them in a hidden compartment in her pencil case. Each baggie has enough for lunch so she just has to bring one baggie with her to lunch.

She doesn't always do her huffs at 100% all the time, but she's doing most of them reasonably well, so I don't make it an issue. When she seems overly distracted during vest/huff time I ask her something like "How many sets have you done?" on the pretense that I need to know when she's done so dinner will be ready, but it's just to get her to think about what she's doing without nagging her to pay attention. I am usually cooking dinner nearby, and I can see her, but as far as she's concerned she's on her own.

So far we haven't had to deal with any rebellion. Luckily she's waaaaay healthy, so if that comes up we have some leeway and it won't be a desperate issue to deal with. On the downside of that, she won't realize any immediate consequences for not doing her treatments. She is aware tho of how skipping certain meds affects her, like Zantac, and lactase.

At clinic, we started pulling away from the discussions about two years ago and made sure Sophie did all the talking, listing all current meds, etc. I'm there to clarify or bring anything up that's missed, but otherwise she deals with the docs and nurses. At our Quality Improvement Committee meetings at her clinic, our current project is transitioning to adult care. We're coming up with steps that begin early on to facilitate that transition. A lot depends on the maturity of the child and what they can take on personally, as opposed to age alone. In a couple years, Sophie may start seeing the docs by herself, and I will come in at the end for a recap.

zeeannie
12-05-2009, 08:47 PM
Tonya, your track sounds just like ours. My daughter is 13 now and has been proactive on beginning treatments herself for a few years. Since she became aware of the concept of 'schedules' we had afterschool mapped out to a T. When to have her snack, when to do homework, dinner treatments, etc. Once this became habit, she began doing these things on her own without being reminded. I have now added pills to her set of responsibility. She divvies up all her breakfast/dinner meds in the weekly med dispenser thingie every weekend. We bought tiny baggies (worried that I would trigger some drug bust sting after ordering thousands online!) that she puts her enzymes in for school. She makes a bunch of these up as needed and keeps them in a hidden compartment in her pencil case. Each baggie has enough for lunch so she just has to bring one baggie with her to lunch.

She doesn't always do her huffs at 100% all the time, but she's doing most of them reasonably well, so I don't make it an issue. When she seems overly distracted during vest/huff time I ask her something like "How many sets have you done?" on the pretense that I need to know when she's done so dinner will be ready, but it's just to get her to think about what she's doing without nagging her to pay attention. I am usually cooking dinner nearby, and I can see her, but as far as she's concerned she's on her own.

So far we haven't had to deal with any rebellion. Luckily she's waaaaay healthy, so if that comes up we have some leeway and it won't be a desperate issue to deal with. On the downside of that, she won't realize any immediate consequences for not doing her treatments. She is aware tho of how skipping certain meds affects her, like Zantac, and lactase.

At clinic, we started pulling away from the discussions about two years ago and made sure Sophie did all the talking, listing all current meds, etc. I'm there to clarify or bring anything up that's missed, but otherwise she deals with the docs and nurses. At our Quality Improvement Committee meetings at her clinic, our current project is transitioning to adult care. We're coming up with steps that begin early on to facilitate that transition. A lot depends on the maturity of the child and what they can take on personally, as opposed to age alone. In a couple years, Sophie may start seeing the docs by herself, and I will come in at the end for a recap.

zeeannie
12-05-2009, 08:47 PM
Tonya, your track sounds just like ours. My daughter is 13 now and has been proactive on beginning treatments herself for a few years. Since she became aware of the concept of 'schedules' we had afterschool mapped out to a T. When to have her snack, when to do homework, dinner treatments, etc. Once this became habit, she began doing these things on her own without being reminded. I have now added pills to her set of responsibility. She divvies up all her breakfast/dinner meds in the weekly med dispenser thingie every weekend. We bought tiny baggies (worried that I would trigger some drug bust sting after ordering thousands online!) that she puts her enzymes in for school. She makes a bunch of these up as needed and keeps them in a hidden compartment in her pencil case. Each baggie has enough for lunch so she just has to bring one baggie with her to lunch.
<br />
<br />She doesn't always do her huffs at 100% all the time, but she's doing most of them reasonably well, so I don't make it an issue. When she seems overly distracted during vest/huff time I ask her something like "How many sets have you done?" on the pretense that I need to know when she's done so dinner will be ready, but it's just to get her to think about what she's doing without nagging her to pay attention. I am usually cooking dinner nearby, and I can see her, but as far as she's concerned she's on her own.
<br />
<br />So far we haven't had to deal with any rebellion. Luckily she's waaaaay healthy, so if that comes up we have some leeway and it won't be a desperate issue to deal with. On the downside of that, she won't realize any immediate consequences for not doing her treatments. She is aware tho of how skipping certain meds affects her, like Zantac, and lactase.
<br />
<br />At clinic, we started pulling away from the discussions about two years ago and made sure Sophie did all the talking, listing all current meds, etc. I'm there to clarify or bring anything up that's missed, but otherwise she deals with the docs and nurses. At our Quality Improvement Committee meetings at her clinic, our current project is transitioning to adult care. We're coming up with steps that begin early on to facilitate that transition. A lot depends on the maturity of the child and what they can take on personally, as opposed to age alone. In a couple years, Sophie may start seeing the docs by herself, and I will come in at the end for a recap.

TonyaH
12-05-2009, 10:55 PM
Thank you for your responses. I am so happy to hear this is normal. I was concerned that maybe it was happening too quickly and that I should be concerned about his ability at this age.

Amysmom, I agree with the sterilization remaining under my list of jobs. I'm a little crazy about keeping everything clean and that would be a difficult thing to let go of. I give you so much credit for letting Amy see her doctor alone at 13. That seems like such a huge step right now. Maybe in a couple of years when Andrew is 13 I'll feel differently. Baby steps, right?

Piper, I am expecting to go through the same stages with Andrew. Do you remember if you had any health declines when you "experimenting" with skipping meds, etc.? I want to thank you for responding to this. I always respect what both you and Amy have to offer the online community, so I guess if I can follow in yours and your parents' footsteps, we are doing okay!

Zeannie, I don't know that we have ever spoken, but it's nice to meet you and hear your story. We are only a couple of years apart in the process and it sounds like we have very similar views on self-care for our children. We keep a very strict daily schedule as well, and I see what you mean about that being an advantage for Sophie and Andrew in knowing their routine.

I'll relax and let nature take its course. I know he has to grow up. I've just always felt that my help makes this disease more bearable for him and I'm afraid that I'll have little to offer once he is controlling all of his own meds on top of everything else he has to do each day.

TonyaH
12-05-2009, 10:55 PM
Thank you for your responses. I am so happy to hear this is normal. I was concerned that maybe it was happening too quickly and that I should be concerned about his ability at this age.

Amysmom, I agree with the sterilization remaining under my list of jobs. I'm a little crazy about keeping everything clean and that would be a difficult thing to let go of. I give you so much credit for letting Amy see her doctor alone at 13. That seems like such a huge step right now. Maybe in a couple of years when Andrew is 13 I'll feel differently. Baby steps, right?

Piper, I am expecting to go through the same stages with Andrew. Do you remember if you had any health declines when you "experimenting" with skipping meds, etc.? I want to thank you for responding to this. I always respect what both you and Amy have to offer the online community, so I guess if I can follow in yours and your parents' footsteps, we are doing okay!

Zeannie, I don't know that we have ever spoken, but it's nice to meet you and hear your story. We are only a couple of years apart in the process and it sounds like we have very similar views on self-care for our children. We keep a very strict daily schedule as well, and I see what you mean about that being an advantage for Sophie and Andrew in knowing their routine.

I'll relax and let nature take its course. I know he has to grow up. I've just always felt that my help makes this disease more bearable for him and I'm afraid that I'll have little to offer once he is controlling all of his own meds on top of everything else he has to do each day.

TonyaH
12-05-2009, 10:55 PM
Thank you for your responses. I am so happy to hear this is normal. I was concerned that maybe it was happening too quickly and that I should be concerned about his ability at this age.

Amysmom, I agree with the sterilization remaining under my list of jobs. I'm a little crazy about keeping everything clean and that would be a difficult thing to let go of. I give you so much credit for letting Amy see her doctor alone at 13. That seems like such a huge step right now. Maybe in a couple of years when Andrew is 13 I'll feel differently. Baby steps, right?

Piper, I am expecting to go through the same stages with Andrew. Do you remember if you had any health declines when you "experimenting" with skipping meds, etc.? I want to thank you for responding to this. I always respect what both you and Amy have to offer the online community, so I guess if I can follow in yours and your parents' footsteps, we are doing okay!

Zeannie, I don't know that we have ever spoken, but it's nice to meet you and hear your story. We are only a couple of years apart in the process and it sounds like we have very similar views on self-care for our children. We keep a very strict daily schedule as well, and I see what you mean about that being an advantage for Sophie and Andrew in knowing their routine.

I'll relax and let nature take its course. I know he has to grow up. I've just always felt that my help makes this disease more bearable for him and I'm afraid that I'll have little to offer once he is controlling all of his own meds on top of everything else he has to do each day.

TonyaH
12-05-2009, 10:55 PM
Thank you for your responses. I am so happy to hear this is normal. I was concerned that maybe it was happening too quickly and that I should be concerned about his ability at this age.

Amysmom, I agree with the sterilization remaining under my list of jobs. I'm a little crazy about keeping everything clean and that would be a difficult thing to let go of. I give you so much credit for letting Amy see her doctor alone at 13. That seems like such a huge step right now. Maybe in a couple of years when Andrew is 13 I'll feel differently. Baby steps, right?

Piper, I am expecting to go through the same stages with Andrew. Do you remember if you had any health declines when you "experimenting" with skipping meds, etc.? I want to thank you for responding to this. I always respect what both you and Amy have to offer the online community, so I guess if I can follow in yours and your parents' footsteps, we are doing okay!

Zeannie, I don't know that we have ever spoken, but it's nice to meet you and hear your story. We are only a couple of years apart in the process and it sounds like we have very similar views on self-care for our children. We keep a very strict daily schedule as well, and I see what you mean about that being an advantage for Sophie and Andrew in knowing their routine.

I'll relax and let nature take its course. I know he has to grow up. I've just always felt that my help makes this disease more bearable for him and I'm afraid that I'll have little to offer once he is controlling all of his own meds on top of everything else he has to do each day.

TonyaH
12-05-2009, 10:55 PM
Thank you for your responses. I am so happy to hear this is normal. I was concerned that maybe it was happening too quickly and that I should be concerned about his ability at this age.
<br />
<br />Amysmom, I agree with the sterilization remaining under my list of jobs. I'm a little crazy about keeping everything clean and that would be a difficult thing to let go of. I give you so much credit for letting Amy see her doctor alone at 13. That seems like such a huge step right now. Maybe in a couple of years when Andrew is 13 I'll feel differently. Baby steps, right?
<br />
<br />Piper, I am expecting to go through the same stages with Andrew. Do you remember if you had any health declines when you "experimenting" with skipping meds, etc.? I want to thank you for responding to this. I always respect what both you and Amy have to offer the online community, so I guess if I can follow in yours and your parents' footsteps, we are doing okay!
<br />
<br />Zeannie, I don't know that we have ever spoken, but it's nice to meet you and hear your story. We are only a couple of years apart in the process and it sounds like we have very similar views on self-care for our children. We keep a very strict daily schedule as well, and I see what you mean about that being an advantage for Sophie and Andrew in knowing their routine.
<br />
<br />I'll relax and let nature take its course. I know he has to grow up. I've just always felt that my help makes this disease more bearable for him and I'm afraid that I'll have little to offer once he is controlling all of his own meds on top of everything else he has to do each day.

NYCLawGirl
12-06-2009, 12:50 AM
No actually, I rarely suffered declines at that stage in my life, despite some non-compliance. The times I got sick tended to have more to do with burning myself out or letting a sickness get too far out of hand before seeking help (this was a problem in college and law school, after I fixed my compliance issues but before I became super proactive about things like scheduling emergency clinic visits if I got sick). But I was lucky to have doctors and parents that didn't let me get away with messing around with meds for long. For me it was pretty simple: I rode horses and planned to leave home for college. It was made clear to me by both parents and doctors that neither of those would be an option for me unless I cleaned up my act. The worst period of this was probably 16-17ish (old enough to want independence and to feel frustrated with CF, not mature enough to really deal with everything yet). All throughout high school I tended to only get sick about once a year though.

But I will say that I probably didn't feel as good as I could have during that period of playing around with my meds. Sure, my PFTs stayed high (I was in the 80s until I graduated college), but I probably could have been coughing less had I been more on top of my clearance and treatments. I think it's like that for a lot of us -- we might not get super sick when we skip a treatment or two, but later once we're fully compliant we'll look back and say "gosh, I could have felt SO much better!"

NYCLawGirl
12-06-2009, 12:50 AM
No actually, I rarely suffered declines at that stage in my life, despite some non-compliance. The times I got sick tended to have more to do with burning myself out or letting a sickness get too far out of hand before seeking help (this was a problem in college and law school, after I fixed my compliance issues but before I became super proactive about things like scheduling emergency clinic visits if I got sick). But I was lucky to have doctors and parents that didn't let me get away with messing around with meds for long. For me it was pretty simple: I rode horses and planned to leave home for college. It was made clear to me by both parents and doctors that neither of those would be an option for me unless I cleaned up my act. The worst period of this was probably 16-17ish (old enough to want independence and to feel frustrated with CF, not mature enough to really deal with everything yet). All throughout high school I tended to only get sick about once a year though.

But I will say that I probably didn't feel as good as I could have during that period of playing around with my meds. Sure, my PFTs stayed high (I was in the 80s until I graduated college), but I probably could have been coughing less had I been more on top of my clearance and treatments. I think it's like that for a lot of us -- we might not get super sick when we skip a treatment or two, but later once we're fully compliant we'll look back and say "gosh, I could have felt SO much better!"

NYCLawGirl
12-06-2009, 12:50 AM
No actually, I rarely suffered declines at that stage in my life, despite some non-compliance. The times I got sick tended to have more to do with burning myself out or letting a sickness get too far out of hand before seeking help (this was a problem in college and law school, after I fixed my compliance issues but before I became super proactive about things like scheduling emergency clinic visits if I got sick). But I was lucky to have doctors and parents that didn't let me get away with messing around with meds for long. For me it was pretty simple: I rode horses and planned to leave home for college. It was made clear to me by both parents and doctors that neither of those would be an option for me unless I cleaned up my act. The worst period of this was probably 16-17ish (old enough to want independence and to feel frustrated with CF, not mature enough to really deal with everything yet). All throughout high school I tended to only get sick about once a year though.

But I will say that I probably didn't feel as good as I could have during that period of playing around with my meds. Sure, my PFTs stayed high (I was in the 80s until I graduated college), but I probably could have been coughing less had I been more on top of my clearance and treatments. I think it's like that for a lot of us -- we might not get super sick when we skip a treatment or two, but later once we're fully compliant we'll look back and say "gosh, I could have felt SO much better!"

NYCLawGirl
12-06-2009, 12:50 AM
No actually, I rarely suffered declines at that stage in my life, despite some non-compliance. The times I got sick tended to have more to do with burning myself out or letting a sickness get too far out of hand before seeking help (this was a problem in college and law school, after I fixed my compliance issues but before I became super proactive about things like scheduling emergency clinic visits if I got sick). But I was lucky to have doctors and parents that didn't let me get away with messing around with meds for long. For me it was pretty simple: I rode horses and planned to leave home for college. It was made clear to me by both parents and doctors that neither of those would be an option for me unless I cleaned up my act. The worst period of this was probably 16-17ish (old enough to want independence and to feel frustrated with CF, not mature enough to really deal with everything yet). All throughout high school I tended to only get sick about once a year though.

But I will say that I probably didn't feel as good as I could have during that period of playing around with my meds. Sure, my PFTs stayed high (I was in the 80s until I graduated college), but I probably could have been coughing less had I been more on top of my clearance and treatments. I think it's like that for a lot of us -- we might not get super sick when we skip a treatment or two, but later once we're fully compliant we'll look back and say "gosh, I could have felt SO much better!"

NYCLawGirl
12-06-2009, 12:50 AM
No actually, I rarely suffered declines at that stage in my life, despite some non-compliance. The times I got sick tended to have more to do with burning myself out or letting a sickness get too far out of hand before seeking help (this was a problem in college and law school, after I fixed my compliance issues but before I became super proactive about things like scheduling emergency clinic visits if I got sick). But I was lucky to have doctors and parents that didn't let me get away with messing around with meds for long. For me it was pretty simple: I rode horses and planned to leave home for college. It was made clear to me by both parents and doctors that neither of those would be an option for me unless I cleaned up my act. The worst period of this was probably 16-17ish (old enough to want independence and to feel frustrated with CF, not mature enough to really deal with everything yet). All throughout high school I tended to only get sick about once a year though.
<br />
<br />But I will say that I probably didn't feel as good as I could have during that period of playing around with my meds. Sure, my PFTs stayed high (I was in the 80s until I graduated college), but I probably could have been coughing less had I been more on top of my clearance and treatments. I think it's like that for a lot of us -- we might not get super sick when we skip a treatment or two, but later once we're fully compliant we'll look back and say "gosh, I could have felt SO much better!"

JackieAnn
12-06-2009, 12:55 AM
I'm not really sure if I can be much use on the treatment side of everything. I did okay health wise growing up.

One thing I think I was really unprepard for was the reality of having the disease and what effect it would have on most of my life decisions. It sounds silly, but I never really thought of the bills, Rx copays or chosing a job that has good health coverage. I know my parents had trouble with the bills and insurance growing up but I never really translated that to what it would mean for me later on. I know it more important to take care of your health than to worry about the bills, but it was something I wish I had been more prepared for.

Just a thought...

Best of luck!

JackieAnn
12-06-2009, 12:55 AM
I'm not really sure if I can be much use on the treatment side of everything. I did okay health wise growing up.

One thing I think I was really unprepard for was the reality of having the disease and what effect it would have on most of my life decisions. It sounds silly, but I never really thought of the bills, Rx copays or chosing a job that has good health coverage. I know my parents had trouble with the bills and insurance growing up but I never really translated that to what it would mean for me later on. I know it more important to take care of your health than to worry about the bills, but it was something I wish I had been more prepared for.

Just a thought...

Best of luck!

JackieAnn
12-06-2009, 12:55 AM
I'm not really sure if I can be much use on the treatment side of everything. I did okay health wise growing up.

One thing I think I was really unprepard for was the reality of having the disease and what effect it would have on most of my life decisions. It sounds silly, but I never really thought of the bills, Rx copays or chosing a job that has good health coverage. I know my parents had trouble with the bills and insurance growing up but I never really translated that to what it would mean for me later on. I know it more important to take care of your health than to worry about the bills, but it was something I wish I had been more prepared for.

Just a thought...

Best of luck!

JackieAnn
12-06-2009, 12:55 AM
I'm not really sure if I can be much use on the treatment side of everything. I did okay health wise growing up.

One thing I think I was really unprepard for was the reality of having the disease and what effect it would have on most of my life decisions. It sounds silly, but I never really thought of the bills, Rx copays or chosing a job that has good health coverage. I know my parents had trouble with the bills and insurance growing up but I never really translated that to what it would mean for me later on. I know it more important to take care of your health than to worry about the bills, but it was something I wish I had been more prepared for.

Just a thought...

Best of luck!

JackieAnn
12-06-2009, 12:55 AM
I'm not really sure if I can be much use on the treatment side of everything. I did okay health wise growing up.
<br />
<br />One thing I think I was really unprepard for was the reality of having the disease and what effect it would have on most of my life decisions. It sounds silly, but I never really thought of the bills, Rx copays or chosing a job that has good health coverage. I know my parents had trouble with the bills and insurance growing up but I never really translated that to what it would mean for me later on. I know it more important to take care of your health than to worry about the bills, but it was something I wish I had been more prepared for.
<br />
<br />Just a thought...
<br />
<br />Best of luck!

zeeannie
12-07-2009, 07:35 PM
Tonya, it a big relief to find someone with such similar views and habits. CF is like a fingerprint, everyone is so different! I'd love to hear how things go with Andrew. I still do the sterilizing, and as you say, baby steps. With homework, activities outside of school, and friends and family stuff on top of the extra duties a child with CF has, it's a bit much. Sooner or later it'll all be theirs to do, I guess the steps come when it feels right.

JackieAnn, I've been thinking about the administration side of it all recently and how soon is a good time to get my daughter aware of this stuff. I'm glad you brought it up as something important to be ready for. She's not in highschool yet, but I suppose then would be a good time to start introducing some of the logistics. It makes me feel like I ought to be more organized so that if she starts to take over some of it, it will be clear. I've been doing it myself for so long, even my husband wouldn't know what to do!

zeeannie
12-07-2009, 07:35 PM
Tonya, it a big relief to find someone with such similar views and habits. CF is like a fingerprint, everyone is so different! I'd love to hear how things go with Andrew. I still do the sterilizing, and as you say, baby steps. With homework, activities outside of school, and friends and family stuff on top of the extra duties a child with CF has, it's a bit much. Sooner or later it'll all be theirs to do, I guess the steps come when it feels right.

JackieAnn, I've been thinking about the administration side of it all recently and how soon is a good time to get my daughter aware of this stuff. I'm glad you brought it up as something important to be ready for. She's not in highschool yet, but I suppose then would be a good time to start introducing some of the logistics. It makes me feel like I ought to be more organized so that if she starts to take over some of it, it will be clear. I've been doing it myself for so long, even my husband wouldn't know what to do!

zeeannie
12-07-2009, 07:35 PM
Tonya, it a big relief to find someone with such similar views and habits. CF is like a fingerprint, everyone is so different! I'd love to hear how things go with Andrew. I still do the sterilizing, and as you say, baby steps. With homework, activities outside of school, and friends and family stuff on top of the extra duties a child with CF has, it's a bit much. Sooner or later it'll all be theirs to do, I guess the steps come when it feels right.

JackieAnn, I've been thinking about the administration side of it all recently and how soon is a good time to get my daughter aware of this stuff. I'm glad you brought it up as something important to be ready for. She's not in highschool yet, but I suppose then would be a good time to start introducing some of the logistics. It makes me feel like I ought to be more organized so that if she starts to take over some of it, it will be clear. I've been doing it myself for so long, even my husband wouldn't know what to do!

zeeannie
12-07-2009, 07:35 PM
Tonya, it a big relief to find someone with such similar views and habits. CF is like a fingerprint, everyone is so different! I'd love to hear how things go with Andrew. I still do the sterilizing, and as you say, baby steps. With homework, activities outside of school, and friends and family stuff on top of the extra duties a child with CF has, it's a bit much. Sooner or later it'll all be theirs to do, I guess the steps come when it feels right.

JackieAnn, I've been thinking about the administration side of it all recently and how soon is a good time to get my daughter aware of this stuff. I'm glad you brought it up as something important to be ready for. She's not in highschool yet, but I suppose then would be a good time to start introducing some of the logistics. It makes me feel like I ought to be more organized so that if she starts to take over some of it, it will be clear. I've been doing it myself for so long, even my husband wouldn't know what to do!

zeeannie
12-07-2009, 07:35 PM
Tonya, it a big relief to find someone with such similar views and habits. CF is like a fingerprint, everyone is so different! I'd love to hear how things go with Andrew. I still do the sterilizing, and as you say, baby steps. With homework, activities outside of school, and friends and family stuff on top of the extra duties a child with CF has, it's a bit much. Sooner or later it'll all be theirs to do, I guess the steps come when it feels right.
<br />
<br />JackieAnn, I've been thinking about the administration side of it all recently and how soon is a good time to get my daughter aware of this stuff. I'm glad you brought it up as something important to be ready for. She's not in highschool yet, but I suppose then would be a good time to start introducing some of the logistics. It makes me feel like I ought to be more organized so that if she starts to take over some of it, it will be clear. I've been doing it myself for so long, even my husband wouldn't know what to do!