Parents w/children w/CF

[LisaGreene]

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]

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]

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]

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]

It is sooo hard. But it does get alot easier as they get older so there is hope.
<br />
<br />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.
<br />
<br />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.
<br />
<br />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.
<br />
<br />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.
<br />
<br />Hugs!
<br />Lisa

 

[wuffles]

Thought I'd add a quick opinion from an adult CFer. As a baby, I had all kinds of interactions with other kids and did gymnastics, swimming, trampoline, ballet, you name it. I swam in public pools all the time. I was in some form of daycare/school from when I was 3 years old but did so many things before that. As a side note, I also played with other kids with CF.

In my opinion my parents did the exact right things with me. They were extra careful with washing hands, and EXTRA careful in the hospital environment but they let me do all kinds of things!

I'm now 24 years old with good lung function and manage to stay out of hospital. Sure, part of it is most likely luck, but just thought I'd share my experiences <img src="i/expressions/face-icon-small-smile.gif" border="0">

I know it's not the preferred option, and I'm sorry if someone has mentioned this but I've missed it, but have you thought about a part-time job somewhere like a restaurant, supermarket, etc? I know they don't pay well but you could work a few nights a week or weekends. There are also call centres around where you can just work a few hours a week. As I said, I know it's not fun, but it would give you a few extra dollars which I'm sure would help tremendously!

 

[wuffles]

Thought I'd add a quick opinion from an adult CFer. As a baby, I had all kinds of interactions with other kids and did gymnastics, swimming, trampoline, ballet, you name it. I swam in public pools all the time. I was in some form of daycare/school from when I was 3 years old but did so many things before that. As a side note, I also played with other kids with CF.

In my opinion my parents did the exact right things with me. They were extra careful with washing hands, and EXTRA careful in the hospital environment but they let me do all kinds of things!

I'm now 24 years old with good lung function and manage to stay out of hospital. Sure, part of it is most likely luck, but just thought I'd share my experiences <img src="i/expressions/face-icon-small-smile.gif" border="0">

I know it's not the preferred option, and I'm sorry if someone has mentioned this but I've missed it, but have you thought about a part-time job somewhere like a restaurant, supermarket, etc? I know they don't pay well but you could work a few nights a week or weekends. There are also call centres around where you can just work a few hours a week. As I said, I know it's not fun, but it would give you a few extra dollars which I'm sure would help tremendously!

 

[wuffles]

Thought I'd add a quick opinion from an adult CFer. As a baby, I had all kinds of interactions with other kids and did gymnastics, swimming, trampoline, ballet, you name it. I swam in public pools all the time. I was in some form of daycare/school from when I was 3 years old but did so many things before that. As a side note, I also played with other kids with CF.

In my opinion my parents did the exact right things with me. They were extra careful with washing hands, and EXTRA careful in the hospital environment but they let me do all kinds of things!

I'm now 24 years old with good lung function and manage to stay out of hospital. Sure, part of it is most likely luck, but just thought I'd share my experiences <img src="i/expressions/face-icon-small-smile.gif" border="0">

I know it's not the preferred option, and I'm sorry if someone has mentioned this but I've missed it, but have you thought about a part-time job somewhere like a restaurant, supermarket, etc? I know they don't pay well but you could work a few nights a week or weekends. There are also call centres around where you can just work a few hours a week. As I said, I know it's not fun, but it would give you a few extra dollars which I'm sure would help tremendously!

 

[wuffles]

Thought I'd add a quick opinion from an adult CFer. As a baby, I had all kinds of interactions with other kids and did gymnastics, swimming, trampoline, ballet, you name it. I swam in public pools all the time. I was in some form of daycare/school from when I was 3 years old but did so many things before that. As a side note, I also played with other kids with CF.

In my opinion my parents did the exact right things with me. They were extra careful with washing hands, and EXTRA careful in the hospital environment but they let me do all kinds of things!

I'm now 24 years old with good lung function and manage to stay out of hospital. Sure, part of it is most likely luck, but just thought I'd share my experiences <img src="i/expressions/face-icon-small-smile.gif" border="0">

I know it's not the preferred option, and I'm sorry if someone has mentioned this but I've missed it, but have you thought about a part-time job somewhere like a restaurant, supermarket, etc? I know they don't pay well but you could work a few nights a week or weekends. There are also call centres around where you can just work a few hours a week. As I said, I know it's not fun, but it would give you a few extra dollars which I'm sure would help tremendously!

 

[wuffles]

Thought I'd add a quick opinion from an adult CFer. As a baby, I had all kinds of interactions with other kids and did gymnastics, swimming, trampoline, ballet, you name it. I swam in public pools all the time. I was in some form of daycare/school from when I was 3 years old but did so many things before that. As a side note, I also played with other kids with CF.
<br />
<br />In my opinion my parents did the exact right things with me. They were extra careful with washing hands, and EXTRA careful in the hospital environment but they let me do all kinds of things!
<br />
<br />I'm now 24 years old with good lung function and manage to stay out of hospital. Sure, part of it is most likely luck, but just thought I'd share my experiences <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />I know it's not the preferred option, and I'm sorry if someone has mentioned this but I've missed it, but have you thought about a part-time job somewhere like a restaurant, supermarket, etc? I know they don't pay well but you could work a few nights a week or weekends. There are also call centres around where you can just work a few hours a week. As I said, I know it's not fun, but it would give you a few extra dollars which I'm sure would help tremendously!

 

[vmhoward]

Well, when Garran was a baby, we didnt have alot of money either. We had three older children and he was diagnosed at 2 months old, my oldest child at the time was 5. I had a great job and was making decent money. My husband had a pretty decent job as well.

Garran was in daycare, and he started going into the hospital ALOT. And well I was taking alot of time off of work. And it was not going well with my supervisors. So I had to stop working.

This was hard, and we too had our vehicle repossessed (both of them) Plus cobra insurance bills, until I realized that he could get on Medicaid. I was not that savvy on all that stuff.

In any case, I havent worked alot out of the home since, not because of what the doctors said, but because everytime I put him in a daycare, they never gave him the enzymes when they were supposed to , or his nebs during the day like he needed them, and well, he needed my care.

All kids are different. He started kindergarden, and went to public school all year with no problems, then went to first grade, and half way through the school year was when he had the respiratory failure, and he hasnt been to school since. But I wont blame that on going to school. His lungs just couldnt handle much more.

I guess what I am trying to say, is things happen for a reason, and they might seem like they are all falling apart now, but there may be a day when you look back and say, hey I made it through. And look at us now.

There are alot of options for you, and I know I didnt exactly asnwer your question, but I hope I gave you a little hope that there is a light at the end of the tunnel financially. You can work things out even if you decide to stay home, or if you decide to go back to work. There is help for child care.

Just make sure the decision you make is yours and the doctors and not the doctors alone.

 

[vmhoward]

Well, when Garran was a baby, we didnt have alot of money either. We had three older children and he was diagnosed at 2 months old, my oldest child at the time was 5. I had a great job and was making decent money. My husband had a pretty decent job as well.

Garran was in daycare, and he started going into the hospital ALOT. And well I was taking alot of time off of work. And it was not going well with my supervisors. So I had to stop working.

This was hard, and we too had our vehicle repossessed (both of them) Plus cobra insurance bills, until I realized that he could get on Medicaid. I was not that savvy on all that stuff.

In any case, I havent worked alot out of the home since, not because of what the doctors said, but because everytime I put him in a daycare, they never gave him the enzymes when they were supposed to , or his nebs during the day like he needed them, and well, he needed my care.

All kids are different. He started kindergarden, and went to public school all year with no problems, then went to first grade, and half way through the school year was when he had the respiratory failure, and he hasnt been to school since. But I wont blame that on going to school. His lungs just couldnt handle much more.

I guess what I am trying to say, is things happen for a reason, and they might seem like they are all falling apart now, but there may be a day when you look back and say, hey I made it through. And look at us now.

There are alot of options for you, and I know I didnt exactly asnwer your question, but I hope I gave you a little hope that there is a light at the end of the tunnel financially. You can work things out even if you decide to stay home, or if you decide to go back to work. There is help for child care.

Just make sure the decision you make is yours and the doctors and not the doctors alone.

 

[vmhoward]

Well, when Garran was a baby, we didnt have alot of money either. We had three older children and he was diagnosed at 2 months old, my oldest child at the time was 5. I had a great job and was making decent money. My husband had a pretty decent job as well.

Garran was in daycare, and he started going into the hospital ALOT. And well I was taking alot of time off of work. And it was not going well with my supervisors. So I had to stop working.

This was hard, and we too had our vehicle repossessed (both of them) Plus cobra insurance bills, until I realized that he could get on Medicaid. I was not that savvy on all that stuff.

In any case, I havent worked alot out of the home since, not because of what the doctors said, but because everytime I put him in a daycare, they never gave him the enzymes when they were supposed to , or his nebs during the day like he needed them, and well, he needed my care.

All kids are different. He started kindergarden, and went to public school all year with no problems, then went to first grade, and half way through the school year was when he had the respiratory failure, and he hasnt been to school since. But I wont blame that on going to school. His lungs just couldnt handle much more.

I guess what I am trying to say, is things happen for a reason, and they might seem like they are all falling apart now, but there may be a day when you look back and say, hey I made it through. And look at us now.

There are alot of options for you, and I know I didnt exactly asnwer your question, but I hope I gave you a little hope that there is a light at the end of the tunnel financially. You can work things out even if you decide to stay home, or if you decide to go back to work. There is help for child care.

Just make sure the decision you make is yours and the doctors and not the doctors alone.

 

[vmhoward]

Well, when Garran was a baby, we didnt have alot of money either. We had three older children and he was diagnosed at 2 months old, my oldest child at the time was 5. I had a great job and was making decent money. My husband had a pretty decent job as well.

Garran was in daycare, and he started going into the hospital ALOT. And well I was taking alot of time off of work. And it was not going well with my supervisors. So I had to stop working.

This was hard, and we too had our vehicle repossessed (both of them) Plus cobra insurance bills, until I realized that he could get on Medicaid. I was not that savvy on all that stuff.

In any case, I havent worked alot out of the home since, not because of what the doctors said, but because everytime I put him in a daycare, they never gave him the enzymes when they were supposed to , or his nebs during the day like he needed them, and well, he needed my care.

All kids are different. He started kindergarden, and went to public school all year with no problems, then went to first grade, and half way through the school year was when he had the respiratory failure, and he hasnt been to school since. But I wont blame that on going to school. His lungs just couldnt handle much more.

I guess what I am trying to say, is things happen for a reason, and they might seem like they are all falling apart now, but there may be a day when you look back and say, hey I made it through. And look at us now.

There are alot of options for you, and I know I didnt exactly asnwer your question, but I hope I gave you a little hope that there is a light at the end of the tunnel financially. You can work things out even if you decide to stay home, or if you decide to go back to work. There is help for child care.

Just make sure the decision you make is yours and the doctors and not the doctors alone.

 

[vmhoward]

Well, when Garran was a baby, we didnt have alot of money either. We had three older children and he was diagnosed at 2 months old, my oldest child at the time was 5. I had a great job and was making decent money. My husband had a pretty decent job as well.
<br />
<br />Garran was in daycare, and he started going into the hospital ALOT. And well I was taking alot of time off of work. And it was not going well with my supervisors. So I had to stop working.
<br />
<br />This was hard, and we too had our vehicle repossessed (both of them) Plus cobra insurance bills, until I realized that he could get on Medicaid. I was not that savvy on all that stuff.
<br />
<br />In any case, I havent worked alot out of the home since, not because of what the doctors said, but because everytime I put him in a daycare, they never gave him the enzymes when they were supposed to , or his nebs during the day like he needed them, and well, he needed my care.
<br />
<br />All kids are different. He started kindergarden, and went to public school all year with no problems, then went to first grade, and half way through the school year was when he had the respiratory failure, and he hasnt been to school since. But I wont blame that on going to school. His lungs just couldnt handle much more.
<br />
<br />I guess what I am trying to say, is things happen for a reason, and they might seem like they are all falling apart now, but there may be a day when you look back and say, hey I made it through. And look at us now.
<br />
<br />There are alot of options for you, and I know I didnt exactly asnwer your question, but I hope I gave you a little hope that there is a light at the end of the tunnel financially. You can work things out even if you decide to stay home, or if you decide to go back to work. There is help for child care.
<br />
<br />Just make sure the decision you make is yours and the doctors and not the doctors alone.

 

[Ratatosk]

When DS was diagnosed, we'd wondered about not sending him to daycare, but then thought -- eventually he's going to be in public school. We spoke with his doctor who gave us some suggestions -- size of the daycare class, separating babies from the regular population, being notified if any bugs are going around.... After MUCH thought and consideration, we opted to send him and figured we'd play it by ear. Come up with a different scenario if it didn't work, if he was always getting sick.

He did well in daycare, so DH and I both continued to work full time.

 

[Ratatosk]

When DS was diagnosed, we'd wondered about not sending him to daycare, but then thought -- eventually he's going to be in public school. We spoke with his doctor who gave us some suggestions -- size of the daycare class, separating babies from the regular population, being notified if any bugs are going around.... After MUCH thought and consideration, we opted to send him and figured we'd play it by ear. Come up with a different scenario if it didn't work, if he was always getting sick.

He did well in daycare, so DH and I both continued to work full time.

 

[Ratatosk]

When DS was diagnosed, we'd wondered about not sending him to daycare, but then thought -- eventually he's going to be in public school. We spoke with his doctor who gave us some suggestions -- size of the daycare class, separating babies from the regular population, being notified if any bugs are going around.... After MUCH thought and consideration, we opted to send him and figured we'd play it by ear. Come up with a different scenario if it didn't work, if he was always getting sick.

He did well in daycare, so DH and I both continued to work full time.

 

[Ratatosk]

When DS was diagnosed, we'd wondered about not sending him to daycare, but then thought -- eventually he's going to be in public school. We spoke with his doctor who gave us some suggestions -- size of the daycare class, separating babies from the regular population, being notified if any bugs are going around.... After MUCH thought and consideration, we opted to send him and figured we'd play it by ear. Come up with a different scenario if it didn't work, if he was always getting sick.

He did well in daycare, so DH and I both continued to work full time.

 

[Ratatosk]

When DS was diagnosed, we'd wondered about not sending him to daycare, but then thought -- eventually he's going to be in public school. We spoke with his doctor who gave us some suggestions -- size of the daycare class, separating babies from the regular population, being notified if any bugs are going around.... After MUCH thought and consideration, we opted to send him and figured we'd play it by ear. Come up with a different scenario if it didn't work, if he was always getting sick.
<br />
<br />He did well in daycare, so DH and I both continued to work full time.