Treatment Question?

[kate620]

Hi! Just wanted to let you know I am right there with you. YES, YES, YES to the 2nd question! The struggle to find the balance is never ending for me but I have gotten better at it over time (I think!<img src="i/expressions/face-icon-small-wink.gif" border="0">) I was lectured by our clinic when the h1n1 came out and I took Makailyn out of school. They felt I was crossing that "thin line". They said since Cf doesn't effect her immunity and that a cold could be just as much detremental to her health then I was overreactiong. But, I did find a doctor(not a cf doc ,go figure) that didnt't think I was overreacting and gave me an excuse note for school til she could get the shot for it. I'm starting to wish now that I did just homeschool her especially since I just went to truancy court today. But I want her to have as much of a "normal" life as possible.

Also, I have a sister that has 3 kids (no cf)and she is a stay at home mom. She is like you in the way that she doesn't really go anywhere and it seems like her kids are ALWAYS sick. Maybe it's because they say you have to be exposed to the bad stuff to build an immunity to it.

That sucks that you have to do 4 treatments a day. Mine just does 2 and even that is a challenge so I can only imagine 2 more. Hopefully, her lung functions will go back up soon and she can go back to whatever it was before.

I have been dealing with this for 5 yrs also and you're right it has definitely rocked my world too. Don't know what I would do without my faith. I will keep you and your family in my prayers.

 

[kate620]

Hi! Just wanted to let you know I am right there with you. YES, YES, YES to the 2nd question! The struggle to find the balance is never ending for me but I have gotten better at it over time (I think!<img src="i/expressions/face-icon-small-wink.gif" border="0">) I was lectured by our clinic when the h1n1 came out and I took Makailyn out of school. They felt I was crossing that "thin line". They said since Cf doesn't effect her immunity and that a cold could be just as much detremental to her health then I was overreactiong. But, I did find a doctor(not a cf doc ,go figure) that didnt't think I was overreacting and gave me an excuse note for school til she could get the shot for it. I'm starting to wish now that I did just homeschool her especially since I just went to truancy court today. But I want her to have as much of a "normal" life as possible.

Also, I have a sister that has 3 kids (no cf)and she is a stay at home mom. She is like you in the way that she doesn't really go anywhere and it seems like her kids are ALWAYS sick. Maybe it's because they say you have to be exposed to the bad stuff to build an immunity to it.

That sucks that you have to do 4 treatments a day. Mine just does 2 and even that is a challenge so I can only imagine 2 more. Hopefully, her lung functions will go back up soon and she can go back to whatever it was before.

I have been dealing with this for 5 yrs also and you're right it has definitely rocked my world too. Don't know what I would do without my faith. I will keep you and your family in my prayers.

 

[kate620]

Hi! Just wanted to let you know I am right there with you. YES, YES, YES to the 2nd question! The struggle to find the balance is never ending for me but I have gotten better at it over time (I think!<img src="i/expressions/face-icon-small-wink.gif" border="0">) I was lectured by our clinic when the h1n1 came out and I took Makailyn out of school. They felt I was crossing that "thin line". They said since Cf doesn't effect her immunity and that a cold could be just as much detremental to her health then I was overreactiong. But, I did find a doctor(not a cf doc ,go figure) that didnt't think I was overreacting and gave me an excuse note for school til she could get the shot for it. I'm starting to wish now that I did just homeschool her especially since I just went to truancy court today. But I want her to have as much of a "normal" life as possible.

Also, I have a sister that has 3 kids (no cf)and she is a stay at home mom. She is like you in the way that she doesn't really go anywhere and it seems like her kids are ALWAYS sick. Maybe it's because they say you have to be exposed to the bad stuff to build an immunity to it.

That sucks that you have to do 4 treatments a day. Mine just does 2 and even that is a challenge so I can only imagine 2 more. Hopefully, her lung functions will go back up soon and she can go back to whatever it was before.

I have been dealing with this for 5 yrs also and you're right it has definitely rocked my world too. Don't know what I would do without my faith. I will keep you and your family in my prayers.

 

[kate620]

Hi! Just wanted to let you know I am right there with you. YES, YES, YES to the 2nd question! The struggle to find the balance is never ending for me but I have gotten better at it over time (I think!<img src="i/expressions/face-icon-small-wink.gif" border="0">) I was lectured by our clinic when the h1n1 came out and I took Makailyn out of school. They felt I was crossing that "thin line". They said since Cf doesn't effect her immunity and that a cold could be just as much detremental to her health then I was overreactiong. But, I did find a doctor(not a cf doc ,go figure) that didnt't think I was overreacting and gave me an excuse note for school til she could get the shot for it. I'm starting to wish now that I did just homeschool her especially since I just went to truancy court today. But I want her to have as much of a "normal" life as possible.

Also, I have a sister that has 3 kids (no cf)and she is a stay at home mom. She is like you in the way that she doesn't really go anywhere and it seems like her kids are ALWAYS sick. Maybe it's because they say you have to be exposed to the bad stuff to build an immunity to it.

That sucks that you have to do 4 treatments a day. Mine just does 2 and even that is a challenge so I can only imagine 2 more. Hopefully, her lung functions will go back up soon and she can go back to whatever it was before.

I have been dealing with this for 5 yrs also and you're right it has definitely rocked my world too. Don't know what I would do without my faith. I will keep you and your family in my prayers.

 

[kate620]

Hi! Just wanted to let you know I am right there with you. YES, YES, YES to the 2nd question! The struggle to find the balance is never ending for me but I have gotten better at it over time (I think!<img src="i/expressions/face-icon-small-wink.gif" border="0">) I was lectured by our clinic when the h1n1 came out and I took Makailyn out of school. They felt I was crossing that "thin line". They said since Cf doesn't effect her immunity and that a cold could be just as much detremental to her health then I was overreactiong. But, I did find a doctor(not a cf doc ,go figure) that didnt't think I was overreacting and gave me an excuse note for school til she could get the shot for it. I'm starting to wish now that I did just homeschool her especially since I just went to truancy court today. But I want her to have as much of a "normal" life as possible.
<br />
<br />Also, I have a sister that has 3 kids (no cf)and she is a stay at home mom. She is like you in the way that she doesn't really go anywhere and it seems like her kids are ALWAYS sick. Maybe it's because they say you have to be exposed to the bad stuff to build an immunity to it.
<br />
<br />That sucks that you have to do 4 treatments a day. Mine just does 2 and even that is a challenge so I can only imagine 2 more. Hopefully, her lung functions will go back up soon and she can go back to whatever it was before.
<br />
<br />I have been dealing with this for 5 yrs also and you're right it has definitely rocked my world too. Don't know what I would do without my faith. I will keep you and your family in my prayers.

 

[ymikhale]

I can comment on "normalcy" question with my experience. My dd is 2 y/o now. A year ago we lived a completely normal life without any special precautions except hand washing. And then it struck: she cultured PA. She was not really sick or hospitalised or anything, but gosh, I felt like all we were doing was Tobi (and that was only twice a day).

Since then I pay more attention. I specifically told her not to touch any dirt or anything on the ground. No lake swimming or coming near any stale water. No malls or crowded places in the winter.IMO all these things do not make her unhappy, even though I realise that she is not quite "normal". I really belive that foregoing some normalcy to have a healthier life is worth it b/c one spends less time doing treatments and more time doing other things.

On our (parents) side we also took steps. I clean the shower, pour clorox in sinks and bath every evening. I dry her bath towel after each bath and change hand towels daily. I bought an air purifier and eliminated chemical cleaners. Of course at first it was all overwhelming and seemed impossible to keep up with long term, but now it became a habit and only takes 10-15 minutes in the evening.

sorry for the long post. I hope it helps.

 

[ymikhale]

I can comment on "normalcy" question with my experience. My dd is 2 y/o now. A year ago we lived a completely normal life without any special precautions except hand washing. And then it struck: she cultured PA. She was not really sick or hospitalised or anything, but gosh, I felt like all we were doing was Tobi (and that was only twice a day).

Since then I pay more attention. I specifically told her not to touch any dirt or anything on the ground. No lake swimming or coming near any stale water. No malls or crowded places in the winter.IMO all these things do not make her unhappy, even though I realise that she is not quite "normal". I really belive that foregoing some normalcy to have a healthier life is worth it b/c one spends less time doing treatments and more time doing other things.

On our (parents) side we also took steps. I clean the shower, pour clorox in sinks and bath every evening. I dry her bath towel after each bath and change hand towels daily. I bought an air purifier and eliminated chemical cleaners. Of course at first it was all overwhelming and seemed impossible to keep up with long term, but now it became a habit and only takes 10-15 minutes in the evening.

sorry for the long post. I hope it helps.

 

[ymikhale]

I can comment on "normalcy" question with my experience. My dd is 2 y/o now. A year ago we lived a completely normal life without any special precautions except hand washing. And then it struck: she cultured PA. She was not really sick or hospitalised or anything, but gosh, I felt like all we were doing was Tobi (and that was only twice a day).

Since then I pay more attention. I specifically told her not to touch any dirt or anything on the ground. No lake swimming or coming near any stale water. No malls or crowded places in the winter.IMO all these things do not make her unhappy, even though I realise that she is not quite "normal". I really belive that foregoing some normalcy to have a healthier life is worth it b/c one spends less time doing treatments and more time doing other things.

On our (parents) side we also took steps. I clean the shower, pour clorox in sinks and bath every evening. I dry her bath towel after each bath and change hand towels daily. I bought an air purifier and eliminated chemical cleaners. Of course at first it was all overwhelming and seemed impossible to keep up with long term, but now it became a habit and only takes 10-15 minutes in the evening.

sorry for the long post. I hope it helps.

 

[ymikhale]

I can comment on "normalcy" question with my experience. My dd is 2 y/o now. A year ago we lived a completely normal life without any special precautions except hand washing. And then it struck: she cultured PA. She was not really sick or hospitalised or anything, but gosh, I felt like all we were doing was Tobi (and that was only twice a day).

Since then I pay more attention. I specifically told her not to touch any dirt or anything on the ground. No lake swimming or coming near any stale water. No malls or crowded places in the winter.IMO all these things do not make her unhappy, even though I realise that she is not quite "normal". I really belive that foregoing some normalcy to have a healthier life is worth it b/c one spends less time doing treatments and more time doing other things.

On our (parents) side we also took steps. I clean the shower, pour clorox in sinks and bath every evening. I dry her bath towel after each bath and change hand towels daily. I bought an air purifier and eliminated chemical cleaners. Of course at first it was all overwhelming and seemed impossible to keep up with long term, but now it became a habit and only takes 10-15 minutes in the evening.

sorry for the long post. I hope it helps.

 

[ymikhale]

I can comment on "normalcy" question with my experience. My dd is 2 y/o now. A year ago we lived a completely normal life without any special precautions except hand washing. And then it struck: she cultured PA. She was not really sick or hospitalised or anything, but gosh, I felt like all we were doing was Tobi (and that was only twice a day).
<br />
<br />Since then I pay more attention. I specifically told her not to touch any dirt or anything on the ground. No lake swimming or coming near any stale water. No malls or crowded places in the winter.IMO all these things do not make her unhappy, even though I realise that she is not quite "normal". I really belive that foregoing some normalcy to have a healthier life is worth it b/c one spends less time doing treatments and more time doing other things.
<br />
<br />On our (parents) side we also took steps. I clean the shower, pour clorox in sinks and bath every evening. I dry her bath towel after each bath and change hand towels daily. I bought an air purifier and eliminated chemical cleaners. Of course at first it was all overwhelming and seemed impossible to keep up with long term, but now it became a habit and only takes 10-15 minutes in the evening.
<br />
<br />sorry for the long post. I hope it helps.