Parents w/children w/CF

TobysMom · Aug 31, 2008

Well, I do get scared and honestly I DO try to treat toby like i would any other baby. I dont hide him inside or keep him away from everyone. I was told my his pulmonologist not to bring him to a public pool at this young age b/c of the fact that people use it as a bathroom all the time (yuck!)... also, another thing that made me decide what i have is because putting him in day care would cost extra because he is special needs(needs special care compared to other children) and the cost to do it wouldnt be worth missing out on him growing up and also the fact that if he were to get sick, I'd not even be able to have time off to take care of him! My job will take me back, but it will take time to acrue days to take off, and I'd get fired if I missed a day without having time available, even with a sick child, so it totally sucks.

I was really just looking for alternatives that other families out there may be doing instead of going back to work. I have looked into working from home, but there are so few REAL jobs available to do that... and I had considered doing medical transcription, but I would need to take classes, which will cost $2000 which I obviously dont have right now. So, I'm in a bind im looking to get out of.

TobysMom · Aug 31, 2008

Well, I do get scared and honestly I DO try to treat toby like i would any other baby. I dont hide him inside or keep him away from everyone. I was told my his pulmonologist not to bring him to a public pool at this young age b/c of the fact that people use it as a bathroom all the time (yuck!)... also, another thing that made me decide what i have is because putting him in day care would cost extra because he is special needs(needs special care compared to other children) and the cost to do it wouldnt be worth missing out on him growing up and also the fact that if he were to get sick, I'd not even be able to have time off to take care of him! My job will take me back, but it will take time to acrue days to take off, and I'd get fired if I missed a day without having time available, even with a sick child, so it totally sucks.

I was really just looking for alternatives that other families out there may be doing instead of going back to work. I have looked into working from home, but there are so few REAL jobs available to do that... and I had considered doing medical transcription, but I would need to take classes, which will cost $2000 which I obviously dont have right now. So, I'm in a bind im looking to get out of.

TobysMom · Aug 31, 2008

Well, I do get scared and honestly I DO try to treat toby like i would any other baby. I dont hide him inside or keep him away from everyone. I was told my his pulmonologist not to bring him to a public pool at this young age b/c of the fact that people use it as a bathroom all the time (yuck!)... also, another thing that made me decide what i have is because putting him in day care would cost extra because he is special needs(needs special care compared to other children) and the cost to do it wouldnt be worth missing out on him growing up and also the fact that if he were to get sick, I'd not even be able to have time off to take care of him! My job will take me back, but it will take time to acrue days to take off, and I'd get fired if I missed a day without having time available, even with a sick child, so it totally sucks.

I was really just looking for alternatives that other families out there may be doing instead of going back to work. I have looked into working from home, but there are so few REAL jobs available to do that... and I had considered doing medical transcription, but I would need to take classes, which will cost $2000 which I obviously dont have right now. So, I'm in a bind im looking to get out of.

TobysMom · Aug 31, 2008

Well, I do get scared and honestly I DO try to treat toby like i would any other baby. I dont hide him inside or keep him away from everyone. I was told my his pulmonologist not to bring him to a public pool at this young age b/c of the fact that people use it as a bathroom all the time (yuck!)... also, another thing that made me decide what i have is because putting him in day care would cost extra because he is special needs(needs special care compared to other children) and the cost to do it wouldnt be worth missing out on him growing up and also the fact that if he were to get sick, I'd not even be able to have time off to take care of him! My job will take me back, but it will take time to acrue days to take off, and I'd get fired if I missed a day without having time available, even with a sick child, so it totally sucks.

I was really just looking for alternatives that other families out there may be doing instead of going back to work. I have looked into working from home, but there are so few REAL jobs available to do that... and I had considered doing medical transcription, but I would need to take classes, which will cost $2000 which I obviously dont have right now. So, I'm in a bind im looking to get out of.

TobysMom · Aug 31, 2008

Well, I do get scared and honestly I DO try to treat toby like i would any other baby. I dont hide him inside or keep him away from everyone. I was told my his pulmonologist not to bring him to a public pool at this young age b/c of the fact that people use it as a bathroom all the time (yuck!)... also, another thing that made me decide what i have is because putting him in day care would cost extra because he is special needs(needs special care compared to other children) and the cost to do it wouldnt be worth missing out on him growing up and also the fact that if he were to get sick, I'd not even be able to have time off to take care of him! My job will take me back, but it will take time to acrue days to take off, and I'd get fired if I missed a day without having time available, even with a sick child, so it totally sucks.
 
 I was really just looking for alternatives that other families out there may be doing instead of going back to work. I have looked into working from home, but there are so few REAL jobs available to do that... and I had considered doing medical transcription, but I would need to take classes, which will cost $2000 which I obviously dont have right now. So, I'm in a bind im looking to get out of.

MavinetteH · Aug 31, 2008

I agree with you on the daycare being more expensive because of the "special needs" issue. Also cudos for the full time care. I also take care of my three sons full time, and well the baby is four months and the husband cannot handle the baby for even a little while, the other two he is amazing with. It will get better the older he gets.....
I was told it is near impsooiable to get ssi because they will be able to work when old enough. I am not sure about all of that.
Times are hard enough with the economy, so I feel for you. hold your head up. remember there always is someone worse off somewhere, so count the blessings that you do have.

MavinetteH · Aug 31, 2008

I agree with you on the daycare being more expensive because of the "special needs" issue. Also cudos for the full time care. I also take care of my three sons full time, and well the baby is four months and the husband cannot handle the baby for even a little while, the other two he is amazing with. It will get better the older he gets.....
I was told it is near impsooiable to get ssi because they will be able to work when old enough. I am not sure about all of that.
Times are hard enough with the economy, so I feel for you. hold your head up. remember there always is someone worse off somewhere, so count the blessings that you do have.

MavinetteH · Aug 31, 2008

I agree with you on the daycare being more expensive because of the "special needs" issue. Also cudos for the full time care. I also take care of my three sons full time, and well the baby is four months and the husband cannot handle the baby for even a little while, the other two he is amazing with. It will get better the older he gets.....
I was told it is near impsooiable to get ssi because they will be able to work when old enough. I am not sure about all of that.
Times are hard enough with the economy, so I feel for you. hold your head up. remember there always is someone worse off somewhere, so count the blessings that you do have.

MavinetteH · Aug 31, 2008

I agree with you on the daycare being more expensive because of the "special needs" issue. Also cudos for the full time care. I also take care of my three sons full time, and well the baby is four months and the husband cannot handle the baby for even a little while, the other two he is amazing with. It will get better the older he gets.....
I was told it is near impsooiable to get ssi because they will be able to work when old enough. I am not sure about all of that.
Times are hard enough with the economy, so I feel for you. hold your head up. remember there always is someone worse off somewhere, so count the blessings that you do have.

MavinetteH · Aug 31, 2008

I agree with you on the daycare being more expensive because of the "special needs" issue. Also cudos for the full time care. I also take care of my three sons full time, and well the baby is four months and the husband cannot handle the baby for even a little while, the other two he is amazing with. It will get better the older he gets.....
 I was told it is near impsooiable to get ssi because they will be able to work when old enough. I am not sure about all of that.
 Times are hard enough with the economy, so I feel for you. hold your head up. remember there always is someone worse off somewhere, so count the blessings that you do have.

PlumPerfect · Aug 31, 2008

when my dd was born, non cf'er. we were in a horrible financial situation in which I too had a vehical repo'ed. it was an awful feeling. we knew we couldn't aford daycare so we did opposite shift, which really sucked as well, but it kept food on the table. things got even worse when dh was laid off and we also had my cousin and his gf living with us who couldn't work much ecause their lo one was in the nicu. we some how made it through, God really took care of us is all I can say. If you are a church person call your church and tell them your needs. Our church has even offered to help out with medicine costs if needed. you can go to your township and file to have assistance with bills or rent. Also at least here if you call 211 on your phone it will direct you to a program that you tell them your needs and they will tell you what is availiable in your community and how to get in contact with them. If you need help with food, outside of the food bank, you can go online to angelfood, its a christian based company that delivers food to you for alot cheaper than you can get at any store, its a spacific menue each month but amazing what all you can get....
Hope this helps.. oh also now that things are on the upswing, we hired a credit report person to fix our reports and he gurantees 700 or above, which it almost is. and my repo is off and deleted!! so there is hope, I will pray for you.

PlumPerfect · Aug 31, 2008

when my dd was born, non cf'er. we were in a horrible financial situation in which I too had a vehical repo'ed. it was an awful feeling. we knew we couldn't aford daycare so we did opposite shift, which really sucked as well, but it kept food on the table. things got even worse when dh was laid off and we also had my cousin and his gf living with us who couldn't work much ecause their lo one was in the nicu. we some how made it through, God really took care of us is all I can say. If you are a church person call your church and tell them your needs. Our church has even offered to help out with medicine costs if needed. you can go to your township and file to have assistance with bills or rent. Also at least here if you call 211 on your phone it will direct you to a program that you tell them your needs and they will tell you what is availiable in your community and how to get in contact with them. If you need help with food, outside of the food bank, you can go online to angelfood, its a christian based company that delivers food to you for alot cheaper than you can get at any store, its a spacific menue each month but amazing what all you can get....
Hope this helps.. oh also now that things are on the upswing, we hired a credit report person to fix our reports and he gurantees 700 or above, which it almost is. and my repo is off and deleted!! so there is hope, I will pray for you.

PlumPerfect · Aug 31, 2008

when my dd was born, non cf'er. we were in a horrible financial situation in which I too had a vehical repo'ed. it was an awful feeling. we knew we couldn't aford daycare so we did opposite shift, which really sucked as well, but it kept food on the table. things got even worse when dh was laid off and we also had my cousin and his gf living with us who couldn't work much ecause their lo one was in the nicu. we some how made it through, God really took care of us is all I can say. If you are a church person call your church and tell them your needs. Our church has even offered to help out with medicine costs if needed. you can go to your township and file to have assistance with bills or rent. Also at least here if you call 211 on your phone it will direct you to a program that you tell them your needs and they will tell you what is availiable in your community and how to get in contact with them. If you need help with food, outside of the food bank, you can go online to angelfood, its a christian based company that delivers food to you for alot cheaper than you can get at any store, its a spacific menue each month but amazing what all you can get....
Hope this helps.. oh also now that things are on the upswing, we hired a credit report person to fix our reports and he gurantees 700 or above, which it almost is. and my repo is off and deleted!! so there is hope, I will pray for you.

PlumPerfect · Aug 31, 2008

when my dd was born, non cf'er. we were in a horrible financial situation in which I too had a vehical repo'ed. it was an awful feeling. we knew we couldn't aford daycare so we did opposite shift, which really sucked as well, but it kept food on the table. things got even worse when dh was laid off and we also had my cousin and his gf living with us who couldn't work much ecause their lo one was in the nicu. we some how made it through, God really took care of us is all I can say. If you are a church person call your church and tell them your needs. Our church has even offered to help out with medicine costs if needed. you can go to your township and file to have assistance with bills or rent. Also at least here if you call 211 on your phone it will direct you to a program that you tell them your needs and they will tell you what is availiable in your community and how to get in contact with them. If you need help with food, outside of the food bank, you can go online to angelfood, its a christian based company that delivers food to you for alot cheaper than you can get at any store, its a spacific menue each month but amazing what all you can get....
Hope this helps.. oh also now that things are on the upswing, we hired a credit report person to fix our reports and he gurantees 700 or above, which it almost is. and my repo is off and deleted!! so there is hope, I will pray for you.

PlumPerfect · Aug 31, 2008

when my dd was born, non cf'er. we were in a horrible financial situation in which I too had a vehical repo'ed. it was an awful feeling. we knew we couldn't aford daycare so we did opposite shift, which really sucked as well, but it kept food on the table. things got even worse when dh was laid off and we also had my cousin and his gf living with us who couldn't work much ecause their lo one was in the nicu. we some how made it through, God really took care of us is all I can say. If you are a church person call your church and tell them your needs. Our church has even offered to help out with medicine costs if needed. you can go to your township and file to have assistance with bills or rent. Also at least here if you call 211 on your phone it will direct you to a program that you tell them your needs and they will tell you what is availiable in your community and how to get in contact with them. If you need help with food, outside of the food bank, you can go online to angelfood, its a christian based company that delivers food to you for alot cheaper than you can get at any store, its a spacific menue each month but amazing what all you can get....
 Hope this helps.. oh also now that things are on the upswing, we hired a credit report person to fix our reports and he gurantees 700 or above, which it almost is. and my repo is off and deleted!! so there is hope, I will pray for you.

LisaGreene · Sep 1, 2008

It is sooo hard. But it does get alot easier as they get older so there is hope.

I agree about the idea for contacting people from church. They might be able to help with some care for a few hours each week so you can take a class from a community college or work part time at a fun store you like or just enjoy a latte ;-).

We really are in a tough bind when they are so little. CF costs so much money (and time)! Some folks have found that they are better off not working because they get more help from the state. (It's sad.) Have you talked with your CF clinic social worker? They are trained to help with these situations and know the benefits available for your state.

I wish I could give you more specific ideas. I have been making a little extra money by teaching parenting classes at schools and churches but that is not for everyone and is really hard when they are babies if you don't have good support close by. But my classes were at night where hubby could watch kids (except when he traveled, then I got friends to help.) Now the kids are at school so I try to teach my classes during the days and weekends.

I'll keep you in my prayers. Just make sure you take good care of yourself and do something just for you (bubble baths? read a good book? coffee with a friend? don't forget that mommy-time...) Hey, how about going to a Mom's group at church or MOPS? They saved my sanity when the kids were babies.

Hugs!
Lisa

LisaGreene · Sep 1, 2008

It is sooo hard. But it does get alot easier as they get older so there is hope.

I agree about the idea for contacting people from church. They might be able to help with some care for a few hours each week so you can take a class from a community college or work part time at a fun store you like or just enjoy a latte ;-).

We really are in a tough bind when they are so little. CF costs so much money (and time)! Some folks have found that they are better off not working because they get more help from the state. (It's sad.) Have you talked with your CF clinic social worker? They are trained to help with these situations and know the benefits available for your state.

I wish I could give you more specific ideas. I have been making a little extra money by teaching parenting classes at schools and churches but that is not for everyone and is really hard when they are babies if you don't have good support close by. But my classes were at night where hubby could watch kids (except when he traveled, then I got friends to help.) Now the kids are at school so I try to teach my classes during the days and weekends.

I'll keep you in my prayers. Just make sure you take good care of yourself and do something just for you (bubble baths? read a good book? coffee with a friend? don't forget that mommy-time...) Hey, how about going to a Mom's group at church or MOPS? They saved my sanity when the kids were babies.

Hugs!
Lisa

LisaGreene · Sep 1, 2008

It is sooo hard. But it does get alot easier as they get older so there is hope.

I agree about the idea for contacting people from church. They might be able to help with some care for a few hours each week so you can take a class from a community college or work part time at a fun store you like or just enjoy a latte ;-).

We really are in a tough bind when they are so little. CF costs so much money (and time)! Some folks have found that they are better off not working because they get more help from the state. (It's sad.) Have you talked with your CF clinic social worker? They are trained to help with these situations and know the benefits available for your state.

I wish I could give you more specific ideas. I have been making a little extra money by teaching parenting classes at schools and churches but that is not for everyone and is really hard when they are babies if you don't have good support close by. But my classes were at night where hubby could watch kids (except when he traveled, then I got friends to help.) Now the kids are at school so I try to teach my classes during the days and weekends.

I'll keep you in my prayers. Just make sure you take good care of yourself and do something just for you (bubble baths? read a good book? coffee with a friend? don't forget that mommy-time...) Hey, how about going to a Mom's group at church or MOPS? They saved my sanity when the kids were babies.

Hugs!
Lisa

LisaGreene · Sep 1, 2008

It is sooo hard. But it does get alot easier as they get older so there is hope.

I agree about the idea for contacting people from church. They might be able to help with some care for a few hours each week so you can take a class from a community college or work part time at a fun store you like or just enjoy a latte ;-).

We really are in a tough bind when they are so little. CF costs so much money (and time)! Some folks have found that they are better off not working because they get more help from the state. (It's sad.) Have you talked with your CF clinic social worker? They are trained to help with these situations and know the benefits available for your state.

I wish I could give you more specific ideas. I have been making a little extra money by teaching parenting classes at schools and churches but that is not for everyone and is really hard when they are babies if you don't have good support close by. But my classes were at night where hubby could watch kids (except when he traveled, then I got friends to help.) Now the kids are at school so I try to teach my classes during the days and weekends.

I'll keep you in my prayers. Just make sure you take good care of yourself and do something just for you (bubble baths? read a good book? coffee with a friend? don't forget that mommy-time...) Hey, how about going to a Mom's group at church or MOPS? They saved my sanity when the kids were babies.

Hugs!
Lisa

LisaGreene · Sep 1, 2008

It is sooo hard. But it does get alot easier as they get older so there is hope.
 
 I agree about the idea for contacting people from church. They might be able to help with some care for a few hours each week so you can take a class from a community college or work part time at a fun store you like or just enjoy a latte ;-).
 
 We really are in a tough bind when they are so little. CF costs so much money (and time)! Some folks have found that they are better off not working because they get more help from the state. (It's sad.) Have you talked with your CF clinic social worker? They are trained to help with these situations and know the benefits available for your state.
 
 I wish I could give you more specific ideas. I have been making a little extra money by teaching parenting classes at schools and churches but that is not for everyone and is really hard when they are babies if you don't have good support close by. But my classes were at night where hubby could watch kids (except when he traveled, then I got friends to help.) Now the kids are at school so I try to teach my classes during the days and weekends.
 
 I'll keep you in my prayers. Just make sure you take good care of yourself and do something just for you (bubble baths? read a good book? coffee with a friend? don't forget that mommy-time...) Hey, how about going to a Mom's group at church or MOPS? They saved my sanity when the kids were babies.
 
 Hugs!
 Lisa

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