Hi everyone. I'm a mother of 9 month old twin boys both diagnosed at birth with cystic fibrosis (delta f508 mutation). I just had a question for other parents here who are dealing with cf on a daily basis. How did you cope when you had to go back to work full-time. How did you trust someone else to take care of your child and to be diligent with the medications/physical therapy? & for older aged children, how does it get dealt with in the schools? I have fears about how things will change when the twins go to school, if they will be made fun of for being different, if the teachers will be diligent and help them take their medications, etc. I have so many worries and it all weighs so heavy, just looking for some sound advice from someone who has already "been there and done that" : ) thankyou to anyone who responds.
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- Thread starter Anjy
- Start date
Hi everyone. I'm a mother of 9 month old twin boys both diagnosed at birth with cystic fibrosis (delta f508 mutation). I just had a question for other parents here who are dealing with cf on a daily basis. How did you cope when you had to go back to work full-time. How did you trust someone else to take care of your child and to be diligent with the medications/physical therapy? & for older aged children, how does it get dealt with in the schools? I have fears about how things will change when the twins go to school, if they will be made fun of for being different, if the teachers will be diligent and help them take their medications, etc. I have so many worries and it all weighs so heavy, just looking for some sound advice from someone who has already "been there and done that" : ) thankyou to anyone who responds.
Hi everyone. I'm a mother of 9 month old twin boys both diagnosed at birth with cystic fibrosis (delta f508 mutation). I just had a question for other parents here who are dealing with cf on a daily basis. How did you cope when you had to go back to work full-time. How did you trust someone else to take care of your child and to be diligent with the medications/physical therapy? & for older aged children, how does it get dealt with in the schools? I have fears about how things will change when the twins go to school, if they will be made fun of for being different, if the teachers will be diligent and help them take their medications, etc. I have so many worries and it all weighs so heavy, just looking for some sound advice from someone who has already "been there and done that" : ) thankyou to anyone who responds.
Hi everyone. I'm a mother of 9 month old twin boys both diagnosed at birth with cystic fibrosis (delta f508 mutation). I just had a question for other parents here who are dealing with cf on a daily basis. How did you cope when you had to go back to work full-time. How did you trust someone else to take care of your child and to be diligent with the medications/physical therapy? & for older aged children, how does it get dealt with in the schools? I have fears about how things will change when the twins go to school, if they will be made fun of for being different, if the teachers will be diligent and help them take their medications, etc. I have so many worries and it all weighs so heavy, just looking for some sound advice from someone who has already "been there and done that" : ) thankyou to anyone who responds.
Hi everyone. I'm a mother of 9 month old twin boys both diagnosed at birth with cystic fibrosis (delta f508 mutation). I just had a question for other parents here who are dealing with cf on a daily basis. How did you cope when you had to go back to work full-time. How did you trust someone else to take care of your child and to be diligent with the medications/physical therapy? & for older aged children, how does it get dealt with in the schools? I have fears about how things will change when the twins go to school, if they will be made fun of for being different, if the teachers will be diligent and help them take their medications, etc. I have so many worries and it all weighs so heavy, just looking for some sound advice from someone who has already "been there and done that" : ) thankyou to anyone who responds.
ctalbott0609
New member
Hi! I can't offer much advice, being that I've only been dealing with this HORRID disease for two months, but I will tell you this. The best information I have received is to take things ONE STEP AT A TIME! Handle things as they come, and worry about the now, instead of the future!
My husband and I have decided that I will stay home and take care of our daughter until she is old enough to care for herself, so I'm not good on the advice there, but as far as their care in school goes....worry about that when the time is closer! You're stressed, and tired enough now, just try to relax, and focus on their current issues. It will drive you mad if you try to tackle every possible problem they will encounter in their lives, right now.
I hope this helps. I found myself in the same spot you are now, a very short time ago, and it was horrible. There's no possible way to deal with that situation now, and if things continue the way they are in the field of Research and development, there very well may be a cure by the time our darling children enter their school years! Just try to breathe, and if you need a shoulder to cry on, I'm a good listener!
My husband and I have decided that I will stay home and take care of our daughter until she is old enough to care for herself, so I'm not good on the advice there, but as far as their care in school goes....worry about that when the time is closer! You're stressed, and tired enough now, just try to relax, and focus on their current issues. It will drive you mad if you try to tackle every possible problem they will encounter in their lives, right now.
I hope this helps. I found myself in the same spot you are now, a very short time ago, and it was horrible. There's no possible way to deal with that situation now, and if things continue the way they are in the field of Research and development, there very well may be a cure by the time our darling children enter their school years! Just try to breathe, and if you need a shoulder to cry on, I'm a good listener!
ctalbott0609
New member
Hi! I can't offer much advice, being that I've only been dealing with this HORRID disease for two months, but I will tell you this. The best information I have received is to take things ONE STEP AT A TIME! Handle things as they come, and worry about the now, instead of the future!
My husband and I have decided that I will stay home and take care of our daughter until she is old enough to care for herself, so I'm not good on the advice there, but as far as their care in school goes....worry about that when the time is closer! You're stressed, and tired enough now, just try to relax, and focus on their current issues. It will drive you mad if you try to tackle every possible problem they will encounter in their lives, right now.
I hope this helps. I found myself in the same spot you are now, a very short time ago, and it was horrible. There's no possible way to deal with that situation now, and if things continue the way they are in the field of Research and development, there very well may be a cure by the time our darling children enter their school years! Just try to breathe, and if you need a shoulder to cry on, I'm a good listener!
My husband and I have decided that I will stay home and take care of our daughter until she is old enough to care for herself, so I'm not good on the advice there, but as far as their care in school goes....worry about that when the time is closer! You're stressed, and tired enough now, just try to relax, and focus on their current issues. It will drive you mad if you try to tackle every possible problem they will encounter in their lives, right now.
I hope this helps. I found myself in the same spot you are now, a very short time ago, and it was horrible. There's no possible way to deal with that situation now, and if things continue the way they are in the field of Research and development, there very well may be a cure by the time our darling children enter their school years! Just try to breathe, and if you need a shoulder to cry on, I'm a good listener!
ctalbott0609
New member
Hi! I can't offer much advice, being that I've only been dealing with this HORRID disease for two months, but I will tell you this. The best information I have received is to take things ONE STEP AT A TIME! Handle things as they come, and worry about the now, instead of the future!
My husband and I have decided that I will stay home and take care of our daughter until she is old enough to care for herself, so I'm not good on the advice there, but as far as their care in school goes....worry about that when the time is closer! You're stressed, and tired enough now, just try to relax, and focus on their current issues. It will drive you mad if you try to tackle every possible problem they will encounter in their lives, right now.
I hope this helps. I found myself in the same spot you are now, a very short time ago, and it was horrible. There's no possible way to deal with that situation now, and if things continue the way they are in the field of Research and development, there very well may be a cure by the time our darling children enter their school years! Just try to breathe, and if you need a shoulder to cry on, I'm a good listener!
My husband and I have decided that I will stay home and take care of our daughter until she is old enough to care for herself, so I'm not good on the advice there, but as far as their care in school goes....worry about that when the time is closer! You're stressed, and tired enough now, just try to relax, and focus on their current issues. It will drive you mad if you try to tackle every possible problem they will encounter in their lives, right now.
I hope this helps. I found myself in the same spot you are now, a very short time ago, and it was horrible. There's no possible way to deal with that situation now, and if things continue the way they are in the field of Research and development, there very well may be a cure by the time our darling children enter their school years! Just try to breathe, and if you need a shoulder to cry on, I'm a good listener!
ctalbott0609
New member
Hi! I can't offer much advice, being that I've only been dealing with this HORRID disease for two months, but I will tell you this. The best information I have received is to take things ONE STEP AT A TIME! Handle things as they come, and worry about the now, instead of the future!
My husband and I have decided that I will stay home and take care of our daughter until she is old enough to care for herself, so I'm not good on the advice there, but as far as their care in school goes....worry about that when the time is closer! You're stressed, and tired enough now, just try to relax, and focus on their current issues. It will drive you mad if you try to tackle every possible problem they will encounter in their lives, right now.
I hope this helps. I found myself in the same spot you are now, a very short time ago, and it was horrible. There's no possible way to deal with that situation now, and if things continue the way they are in the field of Research and development, there very well may be a cure by the time our darling children enter their school years! Just try to breathe, and if you need a shoulder to cry on, I'm a good listener!
My husband and I have decided that I will stay home and take care of our daughter until she is old enough to care for herself, so I'm not good on the advice there, but as far as their care in school goes....worry about that when the time is closer! You're stressed, and tired enough now, just try to relax, and focus on their current issues. It will drive you mad if you try to tackle every possible problem they will encounter in their lives, right now.
I hope this helps. I found myself in the same spot you are now, a very short time ago, and it was horrible. There's no possible way to deal with that situation now, and if things continue the way they are in the field of Research and development, there very well may be a cure by the time our darling children enter their school years! Just try to breathe, and if you need a shoulder to cry on, I'm a good listener!
ctalbott0609
New member
Hi! I can't offer much advice, being that I've only been dealing with this HORRID disease for two months, but I will tell you this. The best information I have received is to take things ONE STEP AT A TIME! Handle things as they come, and worry about the now, instead of the future!
<br />
<br />My husband and I have decided that I will stay home and take care of our daughter until she is old enough to care for herself, so I'm not good on the advice there, but as far as their care in school goes....worry about that when the time is closer! You're stressed, and tired enough now, just try to relax, and focus on their current issues. It will drive you mad if you try to tackle every possible problem they will encounter in their lives, right now.
<br />
<br />I hope this helps. I found myself in the same spot you are now, a very short time ago, and it was horrible. There's no possible way to deal with that situation now, and if things continue the way they are in the field of Research and development, there very well may be a cure by the time our darling children enter their school years! Just try to breathe, and if you need a shoulder to cry on, I'm a good listener!
<br />
<br />My husband and I have decided that I will stay home and take care of our daughter until she is old enough to care for herself, so I'm not good on the advice there, but as far as their care in school goes....worry about that when the time is closer! You're stressed, and tired enough now, just try to relax, and focus on their current issues. It will drive you mad if you try to tackle every possible problem they will encounter in their lives, right now.
<br />
<br />I hope this helps. I found myself in the same spot you are now, a very short time ago, and it was horrible. There's no possible way to deal with that situation now, and if things continue the way they are in the field of Research and development, there very well may be a cure by the time our darling children enter their school years! Just try to breathe, and if you need a shoulder to cry on, I'm a good listener!
saveferris2009
New member
I feel very fortunate that my mom decided not to go back to work.
And it's not because we had money. We lived bare bones for years and years.
But it was best for my health, no question about it. I feel very fortunate.
And it's not because we had money. We lived bare bones for years and years.
But it was best for my health, no question about it. I feel very fortunate.
saveferris2009
New member
I feel very fortunate that my mom decided not to go back to work.
And it's not because we had money. We lived bare bones for years and years.
But it was best for my health, no question about it. I feel very fortunate.
And it's not because we had money. We lived bare bones for years and years.
But it was best for my health, no question about it. I feel very fortunate.
saveferris2009
New member
I feel very fortunate that my mom decided not to go back to work.
And it's not because we had money. We lived bare bones for years and years.
But it was best for my health, no question about it. I feel very fortunate.
And it's not because we had money. We lived bare bones for years and years.
But it was best for my health, no question about it. I feel very fortunate.
saveferris2009
New member
I feel very fortunate that my mom decided not to go back to work.
And it's not because we had money. We lived bare bones for years and years.
But it was best for my health, no question about it. I feel very fortunate.
And it's not because we had money. We lived bare bones for years and years.
But it was best for my health, no question about it. I feel very fortunate.
saveferris2009
New member
I feel very fortunate that my mom decided not to go back to work.
<br />
<br />And it's not because we had money. We lived bare bones for years and years.
<br />
<br />But it was best for my health, no question about it. I feel very fortunate.
<br />
<br />And it's not because we had money. We lived bare bones for years and years.
<br />
<br />But it was best for my health, no question about it. I feel very fortunate.
saveferris2009
New member
and P.S. the kids will only be made fun of for being different if you don't give them the tools to be confident.
here's a great site that can help you:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cfvoice.com/info/teens/mentor/disclosure.jsp">http://www.cfvoice.com/info/teens/mentor/disclosure.jsp</a>
here's a great site that can help you:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cfvoice.com/info/teens/mentor/disclosure.jsp">http://www.cfvoice.com/info/teens/mentor/disclosure.jsp</a>
saveferris2009
New member
and P.S. the kids will only be made fun of for being different if you don't give them the tools to be confident.
here's a great site that can help you:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cfvoice.com/info/teens/mentor/disclosure.jsp">http://www.cfvoice.com/info/teens/mentor/disclosure.jsp</a>
here's a great site that can help you:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cfvoice.com/info/teens/mentor/disclosure.jsp">http://www.cfvoice.com/info/teens/mentor/disclosure.jsp</a>
saveferris2009
New member
and P.S. the kids will only be made fun of for being different if you don't give them the tools to be confident.
here's a great site that can help you:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cfvoice.com/info/teens/mentor/disclosure.jsp">http://www.cfvoice.com/info/teens/mentor/disclosure.jsp</a>
here's a great site that can help you:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cfvoice.com/info/teens/mentor/disclosure.jsp">http://www.cfvoice.com/info/teens/mentor/disclosure.jsp</a>
saveferris2009
New member
and P.S. the kids will only be made fun of for being different if you don't give them the tools to be confident.
here's a great site that can help you:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cfvoice.com/info/teens/mentor/disclosure.jsp">http://www.cfvoice.com/info/teens/mentor/disclosure.jsp</a>
here's a great site that can help you:
<a target=_blank class=ftalternatingbarlinklarge href="http://www.cfvoice.com/info/teens/mentor/disclosure.jsp">http://www.cfvoice.com/info/teens/mentor/disclosure.jsp</a>
saveferris2009
New member
and P.S. the kids will only be made fun of for being different if you don't give them the tools to be confident.
<br />
<br />here's a great site that can help you:
<br />
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://www.cfvoice.com/info/teens/mentor/disclosure.jsp">http://www.cfvoice.com/info/teens/mentor/disclosure.jsp</a>
<br />
<br />here's a great site that can help you:
<br />
<br /><a target=_blank class=ftalternatingbarlinklarge href="http://www.cfvoice.com/info/teens/mentor/disclosure.jsp">http://www.cfvoice.com/info/teens/mentor/disclosure.jsp</a>