Homeschooling

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Emily65Roses

New member
Heh... just food for thought... If we were to wash our hands after every single time we coughed, quite literally, our hands would be rubbed raw. It's impossible. Anyone who says CFers should wash their hands after they cough... either has never lived with one, or is flat out stupid.
 
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Emily65Roses

New member
Heh... just food for thought... If we were to wash our hands after every single time we coughed, quite literally, our hands would be rubbed raw. It's impossible. Anyone who says CFers should wash their hands after they cough... either has never lived with one, or is flat out stupid.
 
E

Emily65Roses

New member
Heh... just food for thought... If we were to wash our hands after every single time we coughed, quite literally, our hands would be rubbed raw. It's impossible. Anyone who says CFers should wash their hands after they cough... either has never lived with one, or is flat out stupid.
 
E

Emily65Roses

New member
Heh... just food for thought... If we were to wash our hands after every single time we coughed, quite literally, our hands would be rubbed raw. It's impossible. Anyone who says CFers should wash their hands after they cough... either has never lived with one, or is flat out stupid.
 
E

Emily65Roses

New member
Heh... just food for thought... If we were to wash our hands after every single time we coughed, quite literally, our hands would be rubbed raw. It's impossible. Anyone who says CFers should wash their hands after they cough... either has never lived with one, or is flat out stupid.
 
S

Sakem

New member
To put my two cents in as a follow up:

I can understand why Reeces's doctor suggested keeping him out of school. He has had a rough road from start. While I may not totally understand, because my son is very healthy and at 10 has never needed antibiotics, I also am friends with someone whose daughter passed away just recently at the age of 7 from CF. So, because of this I realize how serious CF is for a small minority of kids.

BUT: Emily is right, you can not shield your child from all the evil sneezes of the world. The first time I read about a preschoolder have their own personal nurse, I was like whatever, to each their own, then I thought, how in the H*LL does a school system rationalize that, now I think I leaning to the fact that it is pure out abuse of the system and a waste of tax payer money.

Why? Well at our school my son goes down to get his meds, there are 5 clasees per grade, so over 500 kids in the school. THe nurses office is never swarming with sick kids, and if there is someone in there, he is literally in there for 10 SECONDS to chase down his pills with a shot of water, then gone. I see no need for a nurse in the class room unless a child was on a vent, IV, or sometthing like uncontoled seizures. If a parent did not want their child going to the nurses office to get pills, then I would think the school system would have the nurse persoanlly take the pills to the child.

CF is a horrilble thing, more horrible to some than others, but a child exposed to a sneeze is not going to drop over dead in the classroom.
 
S

Sakem

New member
To put my two cents in as a follow up:

I can understand why Reeces's doctor suggested keeping him out of school. He has had a rough road from start. While I may not totally understand, because my son is very healthy and at 10 has never needed antibiotics, I also am friends with someone whose daughter passed away just recently at the age of 7 from CF. So, because of this I realize how serious CF is for a small minority of kids.

BUT: Emily is right, you can not shield your child from all the evil sneezes of the world. The first time I read about a preschoolder have their own personal nurse, I was like whatever, to each their own, then I thought, how in the H*LL does a school system rationalize that, now I think I leaning to the fact that it is pure out abuse of the system and a waste of tax payer money.

Why? Well at our school my son goes down to get his meds, there are 5 clasees per grade, so over 500 kids in the school. THe nurses office is never swarming with sick kids, and if there is someone in there, he is literally in there for 10 SECONDS to chase down his pills with a shot of water, then gone. I see no need for a nurse in the class room unless a child was on a vent, IV, or sometthing like uncontoled seizures. If a parent did not want their child going to the nurses office to get pills, then I would think the school system would have the nurse persoanlly take the pills to the child.

CF is a horrilble thing, more horrible to some than others, but a child exposed to a sneeze is not going to drop over dead in the classroom.
 
S

Sakem

New member
To put my two cents in as a follow up:

I can understand why Reeces's doctor suggested keeping him out of school. He has had a rough road from start. While I may not totally understand, because my son is very healthy and at 10 has never needed antibiotics, I also am friends with someone whose daughter passed away just recently at the age of 7 from CF. So, because of this I realize how serious CF is for a small minority of kids.

BUT: Emily is right, you can not shield your child from all the evil sneezes of the world. The first time I read about a preschoolder have their own personal nurse, I was like whatever, to each their own, then I thought, how in the H*LL does a school system rationalize that, now I think I leaning to the fact that it is pure out abuse of the system and a waste of tax payer money.

Why? Well at our school my son goes down to get his meds, there are 5 clasees per grade, so over 500 kids in the school. THe nurses office is never swarming with sick kids, and if there is someone in there, he is literally in there for 10 SECONDS to chase down his pills with a shot of water, then gone. I see no need for a nurse in the class room unless a child was on a vent, IV, or sometthing like uncontoled seizures. If a parent did not want their child going to the nurses office to get pills, then I would think the school system would have the nurse persoanlly take the pills to the child.

CF is a horrilble thing, more horrible to some than others, but a child exposed to a sneeze is not going to drop over dead in the classroom.
 
S

Sakem

New member
To put my two cents in as a follow up:

I can understand why Reeces's doctor suggested keeping him out of school. He has had a rough road from start. While I may not totally understand, because my son is very healthy and at 10 has never needed antibiotics, I also am friends with someone whose daughter passed away just recently at the age of 7 from CF. So, because of this I realize how serious CF is for a small minority of kids.

BUT: Emily is right, you can not shield your child from all the evil sneezes of the world. The first time I read about a preschoolder have their own personal nurse, I was like whatever, to each their own, then I thought, how in the H*LL does a school system rationalize that, now I think I leaning to the fact that it is pure out abuse of the system and a waste of tax payer money.

Why? Well at our school my son goes down to get his meds, there are 5 clasees per grade, so over 500 kids in the school. THe nurses office is never swarming with sick kids, and if there is someone in there, he is literally in there for 10 SECONDS to chase down his pills with a shot of water, then gone. I see no need for a nurse in the class room unless a child was on a vent, IV, or sometthing like uncontoled seizures. If a parent did not want their child going to the nurses office to get pills, then I would think the school system would have the nurse persoanlly take the pills to the child.

CF is a horrilble thing, more horrible to some than others, but a child exposed to a sneeze is not going to drop over dead in the classroom.
 
S

Sakem

New member
To put my two cents in as a follow up:

I can understand why Reeces's doctor suggested keeping him out of school. He has had a rough road from start. While I may not totally understand, because my son is very healthy and at 10 has never needed antibiotics, I also am friends with someone whose daughter passed away just recently at the age of 7 from CF. So, because of this I realize how serious CF is for a small minority of kids.

BUT: Emily is right, you can not shield your child from all the evil sneezes of the world. The first time I read about a preschoolder have their own personal nurse, I was like whatever, to each their own, then I thought, how in the H*LL does a school system rationalize that, now I think I leaning to the fact that it is pure out abuse of the system and a waste of tax payer money.

Why? Well at our school my son goes down to get his meds, there are 5 clasees per grade, so over 500 kids in the school. THe nurses office is never swarming with sick kids, and if there is someone in there, he is literally in there for 10 SECONDS to chase down his pills with a shot of water, then gone. I see no need for a nurse in the class room unless a child was on a vent, IV, or sometthing like uncontoled seizures. If a parent did not want their child going to the nurses office to get pills, then I would think the school system would have the nurse persoanlly take the pills to the child.

CF is a horrilble thing, more horrible to some than others, but a child exposed to a sneeze is not going to drop over dead in the classroom.
 
W

wanderlost

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Emily65Roses</b></i>


1. Docs do not know everything. Not even CF docs. I've had CF docs give me advice before that I didn't agree with and didn't follow. My current doc doesn't give me orders, he gives me choices, and we decide together. Much better way of doing it. Just because they have medical degrees does not mean they get to decide anything and everything in your kid's life. Second question everything. Ask why about everything.



2. I don't think I know what works for EVERY CFer. But I do think I have a better idea than some of the newer parents who have only been living with it for 5 years (give or take). What I say is general advice. It's not going to work for every kid (as we have been shown according to what Reece's mom said). But lots of parents are way too overprotective for no reason. Reece's mom seems to have a reason. She's the exception here, not the rule. And I'm tired of parents screwing their kids, so I will continue to speak up about it whenever I see it.



3. The CFF guidelines, like anything else, are there to cover their own @ss. There are still plenty of CFers that hang out with each other. And as long as you use common frickin sense, it's not harmful. In fact, it's less harmful than being in the hospital (where they have you half the time anyway). But because they can control us seeing each other and not whether or not we go inpatient, they will tell us NOT TO see each other!!! They're not 100% correct all the time. Most of all, it seems, about everything to avoid.



I don't pretend to know more than everyone else. But I stand by what I say when I say I've been around it a hell of a lot longer than you and I have probably a more rounded outlook on the whole thing than you do. Hence... what I said.
</end quote></div>

AMEN!

I completely agree with what Emily said above.

I think I have a very similar outlook, but I also see things as a mom and as a CFer (though not as the mother of a CFer) and as a mom, I understand 100% trying to do everything that is right for your child.

As a Cfer, I realize how important it is for Cf to be a MINOR role in life - a nuisance more than a staple, if that makes sense. However, after reading this thread, I have to say, as a mom, I agree that in Reece's case, he's so young and his health is so precarious, that Leah really needs to follow her gut and make the right decisions, which it sounds like she is...;

as far as some of the other things I've read by Cfer paretns (not nec. in this thread), I feel like when I come to the families section I am often rolling my eyes and "gimme-a-break"-ing when I read some of the things parents are doing with their Cfers and i thank God everyday that my own parents did not treat me that way.

Parenting is hard, no doubt and having Cf is hard, but I do feel that in the case of parenting a Cfer, it is of dire importance that that little Cfer have a NORMAL lfe - and I understand that normal will be subjective. When I grew up the idea of being hospitalized with Cf was unfathomable - it didn't happen - but I knew another little girl who was in and out of the hospital, had a port and feeding tube, etc. Her normal and mine were totally different. That girl died at age 25 following her transplant - and I am sure her mother made the best decisions for her that she could all along the way. Just goes to show that there are no "for sures" in life, parenting, or CF.

Anyway though, I'm just budding in, sharing my old $0.02.
 
W

wanderlost

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Emily65Roses</b></i>


1. Docs do not know everything. Not even CF docs. I've had CF docs give me advice before that I didn't agree with and didn't follow. My current doc doesn't give me orders, he gives me choices, and we decide together. Much better way of doing it. Just because they have medical degrees does not mean they get to decide anything and everything in your kid's life. Second question everything. Ask why about everything.



2. I don't think I know what works for EVERY CFer. But I do think I have a better idea than some of the newer parents who have only been living with it for 5 years (give or take). What I say is general advice. It's not going to work for every kid (as we have been shown according to what Reece's mom said). But lots of parents are way too overprotective for no reason. Reece's mom seems to have a reason. She's the exception here, not the rule. And I'm tired of parents screwing their kids, so I will continue to speak up about it whenever I see it.



3. The CFF guidelines, like anything else, are there to cover their own @ss. There are still plenty of CFers that hang out with each other. And as long as you use common frickin sense, it's not harmful. In fact, it's less harmful than being in the hospital (where they have you half the time anyway). But because they can control us seeing each other and not whether or not we go inpatient, they will tell us NOT TO see each other!!! They're not 100% correct all the time. Most of all, it seems, about everything to avoid.



I don't pretend to know more than everyone else. But I stand by what I say when I say I've been around it a hell of a lot longer than you and I have probably a more rounded outlook on the whole thing than you do. Hence... what I said.
</end quote></div>

AMEN!

I completely agree with what Emily said above.

I think I have a very similar outlook, but I also see things as a mom and as a CFer (though not as the mother of a CFer) and as a mom, I understand 100% trying to do everything that is right for your child.

As a Cfer, I realize how important it is for Cf to be a MINOR role in life - a nuisance more than a staple, if that makes sense. However, after reading this thread, I have to say, as a mom, I agree that in Reece's case, he's so young and his health is so precarious, that Leah really needs to follow her gut and make the right decisions, which it sounds like she is...;

as far as some of the other things I've read by Cfer paretns (not nec. in this thread), I feel like when I come to the families section I am often rolling my eyes and "gimme-a-break"-ing when I read some of the things parents are doing with their Cfers and i thank God everyday that my own parents did not treat me that way.

Parenting is hard, no doubt and having Cf is hard, but I do feel that in the case of parenting a Cfer, it is of dire importance that that little Cfer have a NORMAL lfe - and I understand that normal will be subjective. When I grew up the idea of being hospitalized with Cf was unfathomable - it didn't happen - but I knew another little girl who was in and out of the hospital, had a port and feeding tube, etc. Her normal and mine were totally different. That girl died at age 25 following her transplant - and I am sure her mother made the best decisions for her that she could all along the way. Just goes to show that there are no "for sures" in life, parenting, or CF.

Anyway though, I'm just budding in, sharing my old $0.02.
 
W

wanderlost

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Emily65Roses</b></i>


1. Docs do not know everything. Not even CF docs. I've had CF docs give me advice before that I didn't agree with and didn't follow. My current doc doesn't give me orders, he gives me choices, and we decide together. Much better way of doing it. Just because they have medical degrees does not mean they get to decide anything and everything in your kid's life. Second question everything. Ask why about everything.



2. I don't think I know what works for EVERY CFer. But I do think I have a better idea than some of the newer parents who have only been living with it for 5 years (give or take). What I say is general advice. It's not going to work for every kid (as we have been shown according to what Reece's mom said). But lots of parents are way too overprotective for no reason. Reece's mom seems to have a reason. She's the exception here, not the rule. And I'm tired of parents screwing their kids, so I will continue to speak up about it whenever I see it.



3. The CFF guidelines, like anything else, are there to cover their own @ss. There are still plenty of CFers that hang out with each other. And as long as you use common frickin sense, it's not harmful. In fact, it's less harmful than being in the hospital (where they have you half the time anyway). But because they can control us seeing each other and not whether or not we go inpatient, they will tell us NOT TO see each other!!! They're not 100% correct all the time. Most of all, it seems, about everything to avoid.



I don't pretend to know more than everyone else. But I stand by what I say when I say I've been around it a hell of a lot longer than you and I have probably a more rounded outlook on the whole thing than you do. Hence... what I said.
</end quote></div>

AMEN!

I completely agree with what Emily said above.

I think I have a very similar outlook, but I also see things as a mom and as a CFer (though not as the mother of a CFer) and as a mom, I understand 100% trying to do everything that is right for your child.

As a Cfer, I realize how important it is for Cf to be a MINOR role in life - a nuisance more than a staple, if that makes sense. However, after reading this thread, I have to say, as a mom, I agree that in Reece's case, he's so young and his health is so precarious, that Leah really needs to follow her gut and make the right decisions, which it sounds like she is...;

as far as some of the other things I've read by Cfer paretns (not nec. in this thread), I feel like when I come to the families section I am often rolling my eyes and "gimme-a-break"-ing when I read some of the things parents are doing with their Cfers and i thank God everyday that my own parents did not treat me that way.

Parenting is hard, no doubt and having Cf is hard, but I do feel that in the case of parenting a Cfer, it is of dire importance that that little Cfer have a NORMAL lfe - and I understand that normal will be subjective. When I grew up the idea of being hospitalized with Cf was unfathomable - it didn't happen - but I knew another little girl who was in and out of the hospital, had a port and feeding tube, etc. Her normal and mine were totally different. That girl died at age 25 following her transplant - and I am sure her mother made the best decisions for her that she could all along the way. Just goes to show that there are no "for sures" in life, parenting, or CF.

Anyway though, I'm just budding in, sharing my old $0.02.
 
W

wanderlost

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Emily65Roses</b></i>


1. Docs do not know everything. Not even CF docs. I've had CF docs give me advice before that I didn't agree with and didn't follow. My current doc doesn't give me orders, he gives me choices, and we decide together. Much better way of doing it. Just because they have medical degrees does not mean they get to decide anything and everything in your kid's life. Second question everything. Ask why about everything.



2. I don't think I know what works for EVERY CFer. But I do think I have a better idea than some of the newer parents who have only been living with it for 5 years (give or take). What I say is general advice. It's not going to work for every kid (as we have been shown according to what Reece's mom said). But lots of parents are way too overprotective for no reason. Reece's mom seems to have a reason. She's the exception here, not the rule. And I'm tired of parents screwing their kids, so I will continue to speak up about it whenever I see it.



3. The CFF guidelines, like anything else, are there to cover their own @ss. There are still plenty of CFers that hang out with each other. And as long as you use common frickin sense, it's not harmful. In fact, it's less harmful than being in the hospital (where they have you half the time anyway). But because they can control us seeing each other and not whether or not we go inpatient, they will tell us NOT TO see each other!!! They're not 100% correct all the time. Most of all, it seems, about everything to avoid.



I don't pretend to know more than everyone else. But I stand by what I say when I say I've been around it a hell of a lot longer than you and I have probably a more rounded outlook on the whole thing than you do. Hence... what I said.
</end quote>

AMEN!

I completely agree with what Emily said above.

I think I have a very similar outlook, but I also see things as a mom and as a CFer (though not as the mother of a CFer) and as a mom, I understand 100% trying to do everything that is right for your child.

As a Cfer, I realize how important it is for Cf to be a MINOR role in life - a nuisance more than a staple, if that makes sense. However, after reading this thread, I have to say, as a mom, I agree that in Reece's case, he's so young and his health is so precarious, that Leah really needs to follow her gut and make the right decisions, which it sounds like she is...;

as far as some of the other things I've read by Cfer paretns (not nec. in this thread), I feel like when I come to the families section I am often rolling my eyes and "gimme-a-break"-ing when I read some of the things parents are doing with their Cfers and i thank God everyday that my own parents did not treat me that way.

Parenting is hard, no doubt and having Cf is hard, but I do feel that in the case of parenting a Cfer, it is of dire importance that that little Cfer have a NORMAL lfe - and I understand that normal will be subjective. When I grew up the idea of being hospitalized with Cf was unfathomable - it didn't happen - but I knew another little girl who was in and out of the hospital, had a port and feeding tube, etc. Her normal and mine were totally different. That girl died at age 25 following her transplant - and I am sure her mother made the best decisions for her that she could all along the way. Just goes to show that there are no "for sures" in life, parenting, or CF.

Anyway though, I'm just budding in, sharing my old $0.02.
 
W

wanderlost

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Emily65Roses</b></i>


1. Docs do not know everything. Not even CF docs. I've had CF docs give me advice before that I didn't agree with and didn't follow. My current doc doesn't give me orders, he gives me choices, and we decide together. Much better way of doing it. Just because they have medical degrees does not mean they get to decide anything and everything in your kid's life. Second question everything. Ask why about everything.



2. I don't think I know what works for EVERY CFer. But I do think I have a better idea than some of the newer parents who have only been living with it for 5 years (give or take). What I say is general advice. It's not going to work for every kid (as we have been shown according to what Reece's mom said). But lots of parents are way too overprotective for no reason. Reece's mom seems to have a reason. She's the exception here, not the rule. And I'm tired of parents screwing their kids, so I will continue to speak up about it whenever I see it.



3. The CFF guidelines, like anything else, are there to cover their own @ss. There are still plenty of CFers that hang out with each other. And as long as you use common frickin sense, it's not harmful. In fact, it's less harmful than being in the hospital (where they have you half the time anyway). But because they can control us seeing each other and not whether or not we go inpatient, they will tell us NOT TO see each other!!! They're not 100% correct all the time. Most of all, it seems, about everything to avoid.



I don't pretend to know more than everyone else. But I stand by what I say when I say I've been around it a hell of a lot longer than you and I have probably a more rounded outlook on the whole thing than you do. Hence... what I said.
</end quote>

AMEN!

I completely agree with what Emily said above.

I think I have a very similar outlook, but I also see things as a mom and as a CFer (though not as the mother of a CFer) and as a mom, I understand 100% trying to do everything that is right for your child.

As a Cfer, I realize how important it is for Cf to be a MINOR role in life - a nuisance more than a staple, if that makes sense. However, after reading this thread, I have to say, as a mom, I agree that in Reece's case, he's so young and his health is so precarious, that Leah really needs to follow her gut and make the right decisions, which it sounds like she is...;

as far as some of the other things I've read by Cfer paretns (not nec. in this thread), I feel like when I come to the families section I am often rolling my eyes and "gimme-a-break"-ing when I read some of the things parents are doing with their Cfers and i thank God everyday that my own parents did not treat me that way.

Parenting is hard, no doubt and having Cf is hard, but I do feel that in the case of parenting a Cfer, it is of dire importance that that little Cfer have a NORMAL lfe - and I understand that normal will be subjective. When I grew up the idea of being hospitalized with Cf was unfathomable - it didn't happen - but I knew another little girl who was in and out of the hospital, had a port and feeding tube, etc. Her normal and mine were totally different. That girl died at age 25 following her transplant - and I am sure her mother made the best decisions for her that she could all along the way. Just goes to show that there are no "for sures" in life, parenting, or CF.

Anyway though, I'm just budding in, sharing my old $0.02.
 
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