What have we learnt that we were not told???

[welshwitch]

I concur with cdale. Life is filled with little hazards, and yes it's good to be aware of them and try to steer your CF kid clear of them, but do NOT prevent your kid from living a normal life!!!!!
You willl drive yourself and your kid crazy!

What have I learned that I was not told?

Well, first all I learned that I lived to be an adult. I was told at my CF clinic as a young child that I should have a will, (yeah, those people were idiots), that I would be in the hospital all the time, and that I would be hooked up to machines by the time I was in college. None of these things happened.

I have also learned that you should never let statistics, overprotective parents, or people with false information dictate how you live your life.

Finally, I learned that once you can handle CF, you can handle ANYTHING!!! Fear is not an option!!!!!!!!!!!!!!!

 

[welshwitch]

I concur with cdale. Life is filled with little hazards, and yes it's good to be aware of them and try to steer your CF kid clear of them, but do NOT prevent your kid from living a normal life!!!!!
You willl drive yourself and your kid crazy!

What have I learned that I was not told?

Well, first all I learned that I lived to be an adult. I was told at my CF clinic as a young child that I should have a will, (yeah, those people were idiots), that I would be in the hospital all the time, and that I would be hooked up to machines by the time I was in college. None of these things happened.

I have also learned that you should never let statistics, overprotective parents, or people with false information dictate how you live your life.

Finally, I learned that once you can handle CF, you can handle ANYTHING!!! Fear is not an option!!!!!!!!!!!!!!!

 

[welshwitch]

I concur with cdale. Life is filled with little hazards, and yes it's good to be aware of them and try to steer your CF kid clear of them, but do NOT prevent your kid from living a normal life!!!!!
You willl drive yourself and your kid crazy!

What have I learned that I was not told?

Well, first all I learned that I lived to be an adult. I was told at my CF clinic as a young child that I should have a will, (yeah, those people were idiots), that I would be in the hospital all the time, and that I would be hooked up to machines by the time I was in college. None of these things happened.

I have also learned that you should never let statistics, overprotective parents, or people with false information dictate how you live your life.

Finally, I learned that once you can handle CF, you can handle ANYTHING!!! Fear is not an option!!!!!!!!!!!!!!!

 

[welshwitch]

I concur with cdale. Life is filled with little hazards, and yes it's good to be aware of them and try to steer your CF kid clear of them, but do NOT prevent your kid from living a normal life!!!!!
You willl drive yourself and your kid crazy!

What have I learned that I was not told?

Well, first all I learned that I lived to be an adult. I was told at my CF clinic as a young child that I should have a will, (yeah, those people were idiots), that I would be in the hospital all the time, and that I would be hooked up to machines by the time I was in college. None of these things happened.

I have also learned that you should never let statistics, overprotective parents, or people with false information dictate how you live your life.

Finally, I learned that once you can handle CF, you can handle ANYTHING!!! Fear is not an option!!!!!!!!!!!!!!!

 

[welshwitch]

I concur with cdale. Life is filled with little hazards, and yes it's good to be aware of them and try to steer your CF kid clear of them, but do NOT prevent your kid from living a normal life!!!!!
You willl drive yourself and your kid crazy!

What have I learned that I was not told?

Well, first all I learned that I lived to be an adult. I was told at my CF clinic as a young child that I should have a will, (yeah, those people were idiots), that I would be in the hospital all the time, and that I would be hooked up to machines by the time I was in college. None of these things happened.

I have also learned that you should never let statistics, overprotective parents, or people with false information dictate how you live your life.

Finally, I learned that once you can handle CF, you can handle ANYTHING!!! Fear is not an option!!!!!!!!!!!!!!!

 

[pjspiegle]

Just another note: If anyone thinks that I was advocating being over-protective, I was not. I am advocating for getting all the information needed to make good decisions with and for the kiddos. Sometimes the idea of putting Nathan in a bubble sounds really good to me but I doubt it is the CF that cuases this, its more of a mom thing and often feel like putting his older brother in one more than him. Not sure if it is a boy thing or not, but I swear the boys are trying to give me a heart attack.

Putting the kiddos in a bubble because they have CF is not at all the message I want to send to anyone. What I was saying is you have to ask lots of questions because often times the CF teams leave out information that parents should have to make decisions for themselves. What is right for one kid, with or without CF, may not be right for another and only the parent and child knows what is best for them. I certainly wasn't saying the kids shouldn't go swimming but rather the parent needs to be aware of the water and make sure they are using a pool that is being tested and cleaned properly. We actually allow Nathan to go into my parents hottub, but only because my father is annal about keeping it clean and changes the water constantly. However, he does not go into say a hotels hottub, then again, we all usually avoid them for more than one reason, if you know what I mean.

Those who have said you cannot protect them from everything is correct. However there are some things in which can be at least avoided when knowing what is at stake such as a buffet. Is eating at a buffet really putting them in a bubble? Is it really necessary to eat at a buffet with all the other options?

Don't try to over-protect, you will only drive your child and yourself crazy, but do use a little common sense. Being informed, informing your child with age appropriate information, advocating for your child, and teaching them how to advocate for themselves is the better place to spend your time.

I just want to make sure that everyone understands where I am coming from. Being a parent is not easy, add CF on top of things, and it is even harder. Balance, a hard thing to achieve even in "normal" circumstances.

 

[pjspiegle]

Just another note: If anyone thinks that I was advocating being over-protective, I was not. I am advocating for getting all the information needed to make good decisions with and for the kiddos. Sometimes the idea of putting Nathan in a bubble sounds really good to me but I doubt it is the CF that cuases this, its more of a mom thing and often feel like putting his older brother in one more than him. Not sure if it is a boy thing or not, but I swear the boys are trying to give me a heart attack.

Putting the kiddos in a bubble because they have CF is not at all the message I want to send to anyone. What I was saying is you have to ask lots of questions because often times the CF teams leave out information that parents should have to make decisions for themselves. What is right for one kid, with or without CF, may not be right for another and only the parent and child knows what is best for them. I certainly wasn't saying the kids shouldn't go swimming but rather the parent needs to be aware of the water and make sure they are using a pool that is being tested and cleaned properly. We actually allow Nathan to go into my parents hottub, but only because my father is annal about keeping it clean and changes the water constantly. However, he does not go into say a hotels hottub, then again, we all usually avoid them for more than one reason, if you know what I mean.

Those who have said you cannot protect them from everything is correct. However there are some things in which can be at least avoided when knowing what is at stake such as a buffet. Is eating at a buffet really putting them in a bubble? Is it really necessary to eat at a buffet with all the other options?

Don't try to over-protect, you will only drive your child and yourself crazy, but do use a little common sense. Being informed, informing your child with age appropriate information, advocating for your child, and teaching them how to advocate for themselves is the better place to spend your time.

I just want to make sure that everyone understands where I am coming from. Being a parent is not easy, add CF on top of things, and it is even harder. Balance, a hard thing to achieve even in "normal" circumstances.

 

[pjspiegle]

Just another note: If anyone thinks that I was advocating being over-protective, I was not. I am advocating for getting all the information needed to make good decisions with and for the kiddos. Sometimes the idea of putting Nathan in a bubble sounds really good to me but I doubt it is the CF that cuases this, its more of a mom thing and often feel like putting his older brother in one more than him. Not sure if it is a boy thing or not, but I swear the boys are trying to give me a heart attack.

Putting the kiddos in a bubble because they have CF is not at all the message I want to send to anyone. What I was saying is you have to ask lots of questions because often times the CF teams leave out information that parents should have to make decisions for themselves. What is right for one kid, with or without CF, may not be right for another and only the parent and child knows what is best for them. I certainly wasn't saying the kids shouldn't go swimming but rather the parent needs to be aware of the water and make sure they are using a pool that is being tested and cleaned properly. We actually allow Nathan to go into my parents hottub, but only because my father is annal about keeping it clean and changes the water constantly. However, he does not go into say a hotels hottub, then again, we all usually avoid them for more than one reason, if you know what I mean.

Those who have said you cannot protect them from everything is correct. However there are some things in which can be at least avoided when knowing what is at stake such as a buffet. Is eating at a buffet really putting them in a bubble? Is it really necessary to eat at a buffet with all the other options?

Don't try to over-protect, you will only drive your child and yourself crazy, but do use a little common sense. Being informed, informing your child with age appropriate information, advocating for your child, and teaching them how to advocate for themselves is the better place to spend your time.

I just want to make sure that everyone understands where I am coming from. Being a parent is not easy, add CF on top of things, and it is even harder. Balance, a hard thing to achieve even in "normal" circumstances.

 

[pjspiegle]

Just another note: If anyone thinks that I was advocating being over-protective, I was not. I am advocating for getting all the information needed to make good decisions with and for the kiddos. Sometimes the idea of putting Nathan in a bubble sounds really good to me but I doubt it is the CF that cuases this, its more of a mom thing and often feel like putting his older brother in one more than him. Not sure if it is a boy thing or not, but I swear the boys are trying to give me a heart attack.

Putting the kiddos in a bubble because they have CF is not at all the message I want to send to anyone. What I was saying is you have to ask lots of questions because often times the CF teams leave out information that parents should have to make decisions for themselves. What is right for one kid, with or without CF, may not be right for another and only the parent and child knows what is best for them. I certainly wasn't saying the kids shouldn't go swimming but rather the parent needs to be aware of the water and make sure they are using a pool that is being tested and cleaned properly. We actually allow Nathan to go into my parents hottub, but only because my father is annal about keeping it clean and changes the water constantly. However, he does not go into say a hotels hottub, then again, we all usually avoid them for more than one reason, if you know what I mean.

Those who have said you cannot protect them from everything is correct. However there are some things in which can be at least avoided when knowing what is at stake such as a buffet. Is eating at a buffet really putting them in a bubble? Is it really necessary to eat at a buffet with all the other options?

Don't try to over-protect, you will only drive your child and yourself crazy, but do use a little common sense. Being informed, informing your child with age appropriate information, advocating for your child, and teaching them how to advocate for themselves is the better place to spend your time.

I just want to make sure that everyone understands where I am coming from. Being a parent is not easy, add CF on top of things, and it is even harder. Balance, a hard thing to achieve even in "normal" circumstances.

 

[pjspiegle]

Just another note: If anyone thinks that I was advocating being over-protective, I was not. I am advocating for getting all the information needed to make good decisions with and for the kiddos. Sometimes the idea of putting Nathan in a bubble sounds really good to me but I doubt it is the CF that cuases this, its more of a mom thing and often feel like putting his older brother in one more than him. Not sure if it is a boy thing or not, but I swear the boys are trying to give me a heart attack.

Putting the kiddos in a bubble because they have CF is not at all the message I want to send to anyone. What I was saying is you have to ask lots of questions because often times the CF teams leave out information that parents should have to make decisions for themselves. What is right for one kid, with or without CF, may not be right for another and only the parent and child knows what is best for them. I certainly wasn't saying the kids shouldn't go swimming but rather the parent needs to be aware of the water and make sure they are using a pool that is being tested and cleaned properly. We actually allow Nathan to go into my parents hottub, but only because my father is annal about keeping it clean and changes the water constantly. However, he does not go into say a hotels hottub, then again, we all usually avoid them for more than one reason, if you know what I mean.

Those who have said you cannot protect them from everything is correct. However there are some things in which can be at least avoided when knowing what is at stake such as a buffet. Is eating at a buffet really putting them in a bubble? Is it really necessary to eat at a buffet with all the other options?

Don't try to over-protect, you will only drive your child and yourself crazy, but do use a little common sense. Being informed, informing your child with age appropriate information, advocating for your child, and teaching them how to advocate for themselves is the better place to spend your time.

I just want to make sure that everyone understands where I am coming from. Being a parent is not easy, add CF on top of things, and it is even harder. Balance, a hard thing to achieve even in "normal" circumstances.

 

[Louieh1]

yesI think you are all trying to say be aware but have some kind of balance though i think its harder for a parent not to be over protective as its part of our genetic make up as mothers.Thank you all for making me so aware of both sides of the coin, i really do wrap Cian up in cotton wool quite a bit but its because i hate seeing him sick.I will try to be a bit more laid back and see how we get on.
What is ib therapy? Definately going to try and see if we can go on the sodium thing, sounds very good.Is it for everyone or just the chesty ones??Because of the vest wedont really have much secretions so will it still be good for us as we still grow yukky bugs(Cant get rid of MRSA for the last couple of years!!)
Thank you all so much,

 

[Louieh1]

yesI think you are all trying to say be aware but have some kind of balance though i think its harder for a parent not to be over protective as its part of our genetic make up as mothers.Thank you all for making me so aware of both sides of the coin, i really do wrap Cian up in cotton wool quite a bit but its because i hate seeing him sick.I will try to be a bit more laid back and see how we get on.
What is ib therapy? Definately going to try and see if we can go on the sodium thing, sounds very good.Is it for everyone or just the chesty ones??Because of the vest wedont really have much secretions so will it still be good for us as we still grow yukky bugs(Cant get rid of MRSA for the last couple of years!!)
Thank you all so much,

 

[Louieh1]

yesI think you are all trying to say be aware but have some kind of balance though i think its harder for a parent not to be over protective as its part of our genetic make up as mothers.Thank you all for making me so aware of both sides of the coin, i really do wrap Cian up in cotton wool quite a bit but its because i hate seeing him sick.I will try to be a bit more laid back and see how we get on.
What is ib therapy? Definately going to try and see if we can go on the sodium thing, sounds very good.Is it for everyone or just the chesty ones??Because of the vest wedont really have much secretions so will it still be good for us as we still grow yukky bugs(Cant get rid of MRSA for the last couple of years!!)
Thank you all so much,

 

[Louieh1]

yesI think you are all trying to say be aware but have some kind of balance though i think its harder for a parent not to be over protective as its part of our genetic make up as mothers.Thank you all for making me so aware of both sides of the coin, i really do wrap Cian up in cotton wool quite a bit but its because i hate seeing him sick.I will try to be a bit more laid back and see how we get on.
What is ib therapy? Definately going to try and see if we can go on the sodium thing, sounds very good.Is it for everyone or just the chesty ones??Because of the vest wedont really have much secretions so will it still be good for us as we still grow yukky bugs(Cant get rid of MRSA for the last couple of years!!)
Thank you all so much,

 

[Louieh1]

yesI think you are all trying to say be aware but have some kind of balance though i think its harder for a parent not to be over protective as its part of our genetic make up as mothers.Thank you all for making me so aware of both sides of the coin, i really do wrap Cian up in cotton wool quite a bit but its because i hate seeing him sick.I will try to be a bit more laid back and see how we get on.
What is ib therapy? Definately going to try and see if we can go on the sodium thing, sounds very good.Is it for everyone or just the chesty ones??Because of the vest wedont really have much secretions so will it still be good for us as we still grow yukky bugs(Cant get rid of MRSA for the last couple of years!!)
Thank you all so much,

 

[SEANP]

Yes the key is balance.........Dont go to either extremes. Protect as much as you can, but live a fairly normal life. We cant protect them from everything. We just do the best we can, take a few more precautions and use common sense. The hypertonic saline treatment I refered to above is a neb treatment.....its like breathing in a mist of salt water, the salt gets on the surface of the lungs, it then pulls the water to the surface of the lungs which helps in the clearing of the mucus. Some people boil their nebs. I use to, but now I wash, put in water and stick in the microwave for 8-10 minutes. I figure what the boiling of the water doesnt kill I will nuke the rest of the bugs.
Sean

 

[SEANP]

Yes the key is balance.........Dont go to either extremes. Protect as much as you can, but live a fairly normal life. We cant protect them from everything. We just do the best we can, take a few more precautions and use common sense. The hypertonic saline treatment I refered to above is a neb treatment.....its like breathing in a mist of salt water, the salt gets on the surface of the lungs, it then pulls the water to the surface of the lungs which helps in the clearing of the mucus. Some people boil their nebs. I use to, but now I wash, put in water and stick in the microwave for 8-10 minutes. I figure what the boiling of the water doesnt kill I will nuke the rest of the bugs.
Sean

 

[SEANP]

Yes the key is balance.........Dont go to either extremes. Protect as much as you can, but live a fairly normal life. We cant protect them from everything. We just do the best we can, take a few more precautions and use common sense. The hypertonic saline treatment I refered to above is a neb treatment.....its like breathing in a mist of salt water, the salt gets on the surface of the lungs, it then pulls the water to the surface of the lungs which helps in the clearing of the mucus. Some people boil their nebs. I use to, but now I wash, put in water and stick in the microwave for 8-10 minutes. I figure what the boiling of the water doesnt kill I will nuke the rest of the bugs.
Sean

 

[SEANP]

Yes the key is balance.........Dont go to either extremes. Protect as much as you can, but live a fairly normal life. We cant protect them from everything. We just do the best we can, take a few more precautions and use common sense. The hypertonic saline treatment I refered to above is a neb treatment.....its like breathing in a mist of salt water, the salt gets on the surface of the lungs, it then pulls the water to the surface of the lungs which helps in the clearing of the mucus. Some people boil their nebs. I use to, but now I wash, put in water and stick in the microwave for 8-10 minutes. I figure what the boiling of the water doesnt kill I will nuke the rest of the bugs.
Sean

 

[SEANP]

Yes the key is balance.........Dont go to either extremes. Protect as much as you can, but live a fairly normal life. We cant protect them from everything. We just do the best we can, take a few more precautions and use common sense. The hypertonic saline treatment I refered to above is a neb treatment.....its like breathing in a mist of salt water, the salt gets on the surface of the lungs, it then pulls the water to the surface of the lungs which helps in the clearing of the mucus. Some people boil their nebs. I use to, but now I wash, put in water and stick in the microwave for 8-10 minutes. I figure what the boiling of the water doesnt kill I will nuke the rest of the bugs.
Sean