Trying to be braver and not keeping her in a bubble

shimmereestar

New member
Ever since dd's diagnosis, I have become super paranoid about germs. We've gotten rid of so many knick-knacks, candles, I no longer use air fresheners, perfume, plug-ins, etc. And I keep the house cleaner, than I thought was possible (for my abilities at least) We've been very cautious about where we go. Now that she's a little older I want to take her to the park, feed the ducks, camping, etc. Am I pushing this to early. I'm so paranoid about germs, wind blowing dust, sand boxes, etc. What do ya'll do? Do you just go and do things as normal? Do you take extra precautions. Would you wait until she's a little older (she's 16 months)? I just don't want to keep her in a bubble, but I'm a little nervous. Also Grandma and G-daddy live out in the country and want to get her a horse in the next year, I love this idea, but again...paranoid. Any thoughts???
 

shimmereestar

New member
Ever since dd's diagnosis, I have become super paranoid about germs. We've gotten rid of so many knick-knacks, candles, I no longer use air fresheners, perfume, plug-ins, etc. And I keep the house cleaner, than I thought was possible (for my abilities at least) We've been very cautious about where we go. Now that she's a little older I want to take her to the park, feed the ducks, camping, etc. Am I pushing this to early. I'm so paranoid about germs, wind blowing dust, sand boxes, etc. What do ya'll do? Do you just go and do things as normal? Do you take extra precautions. Would you wait until she's a little older (she's 16 months)? I just don't want to keep her in a bubble, but I'm a little nervous. Also Grandma and G-daddy live out in the country and want to get her a horse in the next year, I love this idea, but again...paranoid. Any thoughts???
 

shimmereestar

New member
Ever since dd's diagnosis, I have become super paranoid about germs. We've gotten rid of so many knick-knacks, candles, I no longer use air fresheners, perfume, plug-ins, etc. And I keep the house cleaner, than I thought was possible (for my abilities at least) We've been very cautious about where we go. Now that she's a little older I want to take her to the park, feed the ducks, camping, etc. Am I pushing this to early. I'm so paranoid about germs, wind blowing dust, sand boxes, etc. What do ya'll do? Do you just go and do things as normal? Do you take extra precautions. Would you wait until she's a little older (she's 16 months)? I just don't want to keep her in a bubble, but I'm a little nervous. Also Grandma and G-daddy live out in the country and want to get her a horse in the next year, I love this idea, but again...paranoid. Any thoughts???
 

shimmereestar

New member
Ever since dd's diagnosis, I have become super paranoid about germs. We've gotten rid of so many knick-knacks, candles, I no longer use air fresheners, perfume, plug-ins, etc. And I keep the house cleaner, than I thought was possible (for my abilities at least) We've been very cautious about where we go. Now that she's a little older I want to take her to the park, feed the ducks, camping, etc. Am I pushing this to early. I'm so paranoid about germs, wind blowing dust, sand boxes, etc. What do ya'll do? Do you just go and do things as normal? Do you take extra precautions. Would you wait until she's a little older (she's 16 months)? I just don't want to keep her in a bubble, but I'm a little nervous. Also Grandma and G-daddy live out in the country and want to get her a horse in the next year, I love this idea, but again...paranoid. Any thoughts???
 

shimmereestar

New member
Ever since dd's diagnosis, I have become super paranoid about germs. We've gotten rid of so many knick-knacks, candles, I no longer use air fresheners, perfume, plug-ins, etc. And I keep the house cleaner, than I thought was possible (for my abilities at least) We've been very cautious about where we go. Now that she's a little older I want to take her to the park, feed the ducks, camping, etc. Am I pushing this to early. I'm so paranoid about germs, wind blowing dust, sand boxes, etc. What do ya'll do? Do you just go and do things as normal? Do you take extra precautions. Would you wait until she's a little older (she's 16 months)? I just don't want to keep her in a bubble, but I'm a little nervous. Also Grandma and G-daddy live out in the country and want to get her a horse in the next year, I love this idea, but again...paranoid. Any thoughts???
 
M

Mommafirst

Guest
Live your life!!! Seriously, you will have to come to a point (I did anyway) where you just let go of it!!!

What kind of life is it if you are constantly worried?? Keep purell with you... encourage lots of hand washing with soap and water.... keep her away from smokers and other obviously dangerous things..... and then just live!!! Yup that might mean sand boxes and duck feeding and digging in the dirt outside. And follow all those things with a bath and soapy warm water. If she still sticks her hands in her mouth a lot, you might want to hold off on some of it, but introduce it all.

I'm not saying its easy as a CF mom to just let go. But when you do, you'll stop seeing her as your CF child and just a child who happens to have CF. Its sooo much better!!!
 
M

Mommafirst

Guest
Live your life!!! Seriously, you will have to come to a point (I did anyway) where you just let go of it!!!

What kind of life is it if you are constantly worried?? Keep purell with you... encourage lots of hand washing with soap and water.... keep her away from smokers and other obviously dangerous things..... and then just live!!! Yup that might mean sand boxes and duck feeding and digging in the dirt outside. And follow all those things with a bath and soapy warm water. If she still sticks her hands in her mouth a lot, you might want to hold off on some of it, but introduce it all.

I'm not saying its easy as a CF mom to just let go. But when you do, you'll stop seeing her as your CF child and just a child who happens to have CF. Its sooo much better!!!
 
M

Mommafirst

Guest
Live your life!!! Seriously, you will have to come to a point (I did anyway) where you just let go of it!!!

What kind of life is it if you are constantly worried?? Keep purell with you... encourage lots of hand washing with soap and water.... keep her away from smokers and other obviously dangerous things..... and then just live!!! Yup that might mean sand boxes and duck feeding and digging in the dirt outside. And follow all those things with a bath and soapy warm water. If she still sticks her hands in her mouth a lot, you might want to hold off on some of it, but introduce it all.

I'm not saying its easy as a CF mom to just let go. But when you do, you'll stop seeing her as your CF child and just a child who happens to have CF. Its sooo much better!!!
 
M

Mommafirst

Guest
Live your life!!! Seriously, you will have to come to a point (I did anyway) where you just let go of it!!!

What kind of life is it if you are constantly worried?? Keep purell with you... encourage lots of hand washing with soap and water.... keep her away from smokers and other obviously dangerous things..... and then just live!!! Yup that might mean sand boxes and duck feeding and digging in the dirt outside. And follow all those things with a bath and soapy warm water. If she still sticks her hands in her mouth a lot, you might want to hold off on some of it, but introduce it all.

I'm not saying its easy as a CF mom to just let go. But when you do, you'll stop seeing her as your CF child and just a child who happens to have CF. Its sooo much better!!!
 
M

Mommafirst

Guest
Live your life!!! Seriously, you will have to come to a point (I did anyway) where you just let go of it!!!
<br />
<br />What kind of life is it if you are constantly worried?? Keep purell with you... encourage lots of hand washing with soap and water.... keep her away from smokers and other obviously dangerous things..... and then just live!!! Yup that might mean sand boxes and duck feeding and digging in the dirt outside. And follow all those things with a bath and soapy warm water. If she still sticks her hands in her mouth a lot, you might want to hold off on some of it, but introduce it all.
<br />
<br />I'm not saying its easy as a CF mom to just let go. But when you do, you'll stop seeing her as your CF child and just a child who happens to have CF. Its sooo much better!!!
 

Nightwriter

New member
Sarah,

There will be people who will tell you to let your child do everything or not put her in a bubble. And if someone or their child is getting exercerbations, they cannot say that their environment and exposures is not causing many of their problems.

Your insticts and probably knowledge at this point is telling you what is best. We are not normal. Our immune sytems are not normal. And infants and young children like yours do not have fully developed immune systems.

There are things far worse than living in a bubble. And that is living in a prison. Sick all the time. In the hospital all the time. On IV's all the time.

With common sense and protective measures (which I write about all the time), your child may be far healthier and still have a wonderful life. My doctor says that we have no choice -- inflammation from many triggers cause an asthmatic component to CF which cause our airways to swell, causing exacerbations sometimes turning into infections. Either way we get pretty sick.

Avoid triggers, reduce inflammtion, control the asthma component, and you will probably see your child be a lot healthier. But exposure to pollen, wind. playing in dirt (cepacia and other bacterias and funguses are in soil, you very well be likely t see problems. I've been horseback riding, it is pretty dusty. I went motorcycliing in England this year, and wore a charcoal mask and had a blast. Think of it. Mororcycling required me to wear a helmut. leathers, boots, high necked shirt to protect me from the cold -- and that was my friend's normal riding gear. Why wouldn't I protect my LUNGS. And the same goes for horseback riding -- a list of protective measures are taking -- lessons, gear, etc to prevent accidents. Why wouldn't you protect your daughter's lungs? The lungs are the ONLY organ in the body that has no protection. What you breathe goes right in. No bones, no skin, nothing covering them.

Read in the Adult section today, posted by Mom2Lillian, someone who really started taking protective measures and in 3 WEEKS, she is starting to see a difference. Everyone will not get these results so fast. But you'll at least see the possibilities.
 

Nightwriter

New member
Sarah,

There will be people who will tell you to let your child do everything or not put her in a bubble. And if someone or their child is getting exercerbations, they cannot say that their environment and exposures is not causing many of their problems.

Your insticts and probably knowledge at this point is telling you what is best. We are not normal. Our immune sytems are not normal. And infants and young children like yours do not have fully developed immune systems.

There are things far worse than living in a bubble. And that is living in a prison. Sick all the time. In the hospital all the time. On IV's all the time.

With common sense and protective measures (which I write about all the time), your child may be far healthier and still have a wonderful life. My doctor says that we have no choice -- inflammation from many triggers cause an asthmatic component to CF which cause our airways to swell, causing exacerbations sometimes turning into infections. Either way we get pretty sick.

Avoid triggers, reduce inflammtion, control the asthma component, and you will probably see your child be a lot healthier. But exposure to pollen, wind. playing in dirt (cepacia and other bacterias and funguses are in soil, you very well be likely t see problems. I've been horseback riding, it is pretty dusty. I went motorcycliing in England this year, and wore a charcoal mask and had a blast. Think of it. Mororcycling required me to wear a helmut. leathers, boots, high necked shirt to protect me from the cold -- and that was my friend's normal riding gear. Why wouldn't I protect my LUNGS. And the same goes for horseback riding -- a list of protective measures are taking -- lessons, gear, etc to prevent accidents. Why wouldn't you protect your daughter's lungs? The lungs are the ONLY organ in the body that has no protection. What you breathe goes right in. No bones, no skin, nothing covering them.

Read in the Adult section today, posted by Mom2Lillian, someone who really started taking protective measures and in 3 WEEKS, she is starting to see a difference. Everyone will not get these results so fast. But you'll at least see the possibilities.
 

Nightwriter

New member
Sarah,

There will be people who will tell you to let your child do everything or not put her in a bubble. And if someone or their child is getting exercerbations, they cannot say that their environment and exposures is not causing many of their problems.

Your insticts and probably knowledge at this point is telling you what is best. We are not normal. Our immune sytems are not normal. And infants and young children like yours do not have fully developed immune systems.

There are things far worse than living in a bubble. And that is living in a prison. Sick all the time. In the hospital all the time. On IV's all the time.

With common sense and protective measures (which I write about all the time), your child may be far healthier and still have a wonderful life. My doctor says that we have no choice -- inflammation from many triggers cause an asthmatic component to CF which cause our airways to swell, causing exacerbations sometimes turning into infections. Either way we get pretty sick.

Avoid triggers, reduce inflammtion, control the asthma component, and you will probably see your child be a lot healthier. But exposure to pollen, wind. playing in dirt (cepacia and other bacterias and funguses are in soil, you very well be likely t see problems. I've been horseback riding, it is pretty dusty. I went motorcycliing in England this year, and wore a charcoal mask and had a blast. Think of it. Mororcycling required me to wear a helmut. leathers, boots, high necked shirt to protect me from the cold -- and that was my friend's normal riding gear. Why wouldn't I protect my LUNGS. And the same goes for horseback riding -- a list of protective measures are taking -- lessons, gear, etc to prevent accidents. Why wouldn't you protect your daughter's lungs? The lungs are the ONLY organ in the body that has no protection. What you breathe goes right in. No bones, no skin, nothing covering them.

Read in the Adult section today, posted by Mom2Lillian, someone who really started taking protective measures and in 3 WEEKS, she is starting to see a difference. Everyone will not get these results so fast. But you'll at least see the possibilities.
 

Nightwriter

New member
Sarah,

There will be people who will tell you to let your child do everything or not put her in a bubble. And if someone or their child is getting exercerbations, they cannot say that their environment and exposures is not causing many of their problems.

Your insticts and probably knowledge at this point is telling you what is best. We are not normal. Our immune sytems are not normal. And infants and young children like yours do not have fully developed immune systems.

There are things far worse than living in a bubble. And that is living in a prison. Sick all the time. In the hospital all the time. On IV's all the time.

With common sense and protective measures (which I write about all the time), your child may be far healthier and still have a wonderful life. My doctor says that we have no choice -- inflammation from many triggers cause an asthmatic component to CF which cause our airways to swell, causing exacerbations sometimes turning into infections. Either way we get pretty sick.

Avoid triggers, reduce inflammtion, control the asthma component, and you will probably see your child be a lot healthier. But exposure to pollen, wind. playing in dirt (cepacia and other bacterias and funguses are in soil, you very well be likely t see problems. I've been horseback riding, it is pretty dusty. I went motorcycliing in England this year, and wore a charcoal mask and had a blast. Think of it. Mororcycling required me to wear a helmut. leathers, boots, high necked shirt to protect me from the cold -- and that was my friend's normal riding gear. Why wouldn't I protect my LUNGS. And the same goes for horseback riding -- a list of protective measures are taking -- lessons, gear, etc to prevent accidents. Why wouldn't you protect your daughter's lungs? The lungs are the ONLY organ in the body that has no protection. What you breathe goes right in. No bones, no skin, nothing covering them.

Read in the Adult section today, posted by Mom2Lillian, someone who really started taking protective measures and in 3 WEEKS, she is starting to see a difference. Everyone will not get these results so fast. But you'll at least see the possibilities.
 

Nightwriter

New member
Sarah,
<br />
<br />There will be people who will tell you to let your child do everything or not put her in a bubble. And if someone or their child is getting exercerbations, they cannot say that their environment and exposures is not causing many of their problems.
<br />
<br />Your insticts and probably knowledge at this point is telling you what is best. We are not normal. Our immune sytems are not normal. And infants and young children like yours do not have fully developed immune systems.
<br />
<br />There are things far worse than living in a bubble. And that is living in a prison. Sick all the time. In the hospital all the time. On IV's all the time.
<br />
<br />With common sense and protective measures (which I write about all the time), your child may be far healthier and still have a wonderful life. My doctor says that we have no choice -- inflammation from many triggers cause an asthmatic component to CF which cause our airways to swell, causing exacerbations sometimes turning into infections. Either way we get pretty sick.
<br />
<br />Avoid triggers, reduce inflammtion, control the asthma component, and you will probably see your child be a lot healthier. But exposure to pollen, wind. playing in dirt (cepacia and other bacterias and funguses are in soil, you very well be likely t see problems. I've been horseback riding, it is pretty dusty. I went motorcycliing in England this year, and wore a charcoal mask and had a blast. Think of it. Mororcycling required me to wear a helmut. leathers, boots, high necked shirt to protect me from the cold -- and that was my friend's normal riding gear. Why wouldn't I protect my LUNGS. And the same goes for horseback riding -- a list of protective measures are taking -- lessons, gear, etc to prevent accidents. Why wouldn't you protect your daughter's lungs? The lungs are the ONLY organ in the body that has no protection. What you breathe goes right in. No bones, no skin, nothing covering them.
<br />
<br />Read in the Adult section today, posted by Mom2Lillian, someone who really started taking protective measures and in 3 WEEKS, she is starting to see a difference. Everyone will not get these results so fast. But you'll at least see the possibilities.
 

crickit715

New member
sarah,
our little ones are close in age...my daughter was born in dec of 07, so i totally understand where you are coming from, especially with spring coming! last year there was no way my baby was going too many places without alot of caution, but she was so little and just had gtube and nissan surgury. so many people have different opinions on this topic.....do what you think is best!! i am flying by the seat of my pants on this one too!! lol...i too clean like a fool, never wear shoes in the house, no candles, perfumes, spray cleaners, etc.etc.etc. but i do take her outside and let her run around at our playground (but i watch to make sure there arent any "coughing or sneezing" kids touching stuff first! lol)and i always chase her around with hand cleaner. if it is windy or the pollen count is high i do notice her cough more that evening. i will say that i will not allow her to swim in any kind of lake or river or play in standing water (besides pools that are properly maintenanced) because these places harbor pseudomonas...even with all of my cleaning and precautions she contracted pseudomonas and i dont want it to flare up again. i guess im on the fence post a bit with this question....i always air on the side of caution though...its my childs lungs im dealing with and im not willing to take a risk with that!
 

crickit715

New member
sarah,
our little ones are close in age...my daughter was born in dec of 07, so i totally understand where you are coming from, especially with spring coming! last year there was no way my baby was going too many places without alot of caution, but she was so little and just had gtube and nissan surgury. so many people have different opinions on this topic.....do what you think is best!! i am flying by the seat of my pants on this one too!! lol...i too clean like a fool, never wear shoes in the house, no candles, perfumes, spray cleaners, etc.etc.etc. but i do take her outside and let her run around at our playground (but i watch to make sure there arent any "coughing or sneezing" kids touching stuff first! lol)and i always chase her around with hand cleaner. if it is windy or the pollen count is high i do notice her cough more that evening. i will say that i will not allow her to swim in any kind of lake or river or play in standing water (besides pools that are properly maintenanced) because these places harbor pseudomonas...even with all of my cleaning and precautions she contracted pseudomonas and i dont want it to flare up again. i guess im on the fence post a bit with this question....i always air on the side of caution though...its my childs lungs im dealing with and im not willing to take a risk with that!
 

crickit715

New member
sarah,
our little ones are close in age...my daughter was born in dec of 07, so i totally understand where you are coming from, especially with spring coming! last year there was no way my baby was going too many places without alot of caution, but she was so little and just had gtube and nissan surgury. so many people have different opinions on this topic.....do what you think is best!! i am flying by the seat of my pants on this one too!! lol...i too clean like a fool, never wear shoes in the house, no candles, perfumes, spray cleaners, etc.etc.etc. but i do take her outside and let her run around at our playground (but i watch to make sure there arent any "coughing or sneezing" kids touching stuff first! lol)and i always chase her around with hand cleaner. if it is windy or the pollen count is high i do notice her cough more that evening. i will say that i will not allow her to swim in any kind of lake or river or play in standing water (besides pools that are properly maintenanced) because these places harbor pseudomonas...even with all of my cleaning and precautions she contracted pseudomonas and i dont want it to flare up again. i guess im on the fence post a bit with this question....i always air on the side of caution though...its my childs lungs im dealing with and im not willing to take a risk with that!
 

crickit715

New member
sarah,
our little ones are close in age...my daughter was born in dec of 07, so i totally understand where you are coming from, especially with spring coming! last year there was no way my baby was going too many places without alot of caution, but she was so little and just had gtube and nissan surgury. so many people have different opinions on this topic.....do what you think is best!! i am flying by the seat of my pants on this one too!! lol...i too clean like a fool, never wear shoes in the house, no candles, perfumes, spray cleaners, etc.etc.etc. but i do take her outside and let her run around at our playground (but i watch to make sure there arent any "coughing or sneezing" kids touching stuff first! lol)and i always chase her around with hand cleaner. if it is windy or the pollen count is high i do notice her cough more that evening. i will say that i will not allow her to swim in any kind of lake or river or play in standing water (besides pools that are properly maintenanced) because these places harbor pseudomonas...even with all of my cleaning and precautions she contracted pseudomonas and i dont want it to flare up again. i guess im on the fence post a bit with this question....i always air on the side of caution though...its my childs lungs im dealing with and im not willing to take a risk with that!
 

crickit715

New member
sarah,
<br /> our little ones are close in age...my daughter was born in dec of 07, so i totally understand where you are coming from, especially with spring coming! last year there was no way my baby was going too many places without alot of caution, but she was so little and just had gtube and nissan surgury. so many people have different opinions on this topic.....do what you think is best!! i am flying by the seat of my pants on this one too!! lol...i too clean like a fool, never wear shoes in the house, no candles, perfumes, spray cleaners, etc.etc.etc. but i do take her outside and let her run around at our playground (but i watch to make sure there arent any "coughing or sneezing" kids touching stuff first! lol)and i always chase her around with hand cleaner. if it is windy or the pollen count is high i do notice her cough more that evening. i will say that i will not allow her to swim in any kind of lake or river or play in standing water (besides pools that are properly maintenanced) because these places harbor pseudomonas...even with all of my cleaning and precautions she contracted pseudomonas and i dont want it to flare up again. i guess im on the fence post a bit with this question....i always air on the side of caution though...its my childs lungs im dealing with and im not willing to take a risk with that!
 
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