help :)

tinamarie4685

New member
Haley - I am in the same boat as you and it's SCARY. Its so hard to occupy Brianna while I have to do things (nebs, clean, go to the bathroom, shower!) while Kenny is at work. My pft dropped from 74% in late August to 65% as of last week. And I am doing all of my meds, everything. Sometimes i just let Brianna sit in her walker and whine while i do my treatments and i say "mommy has to do this to feel good". Even though she is only 6 months old and cant understand me LOL. Luckily, she LOVES the TV, so i throw on some channel called 'Noggin' and its all educational kid stuff, singing, cool colors. She LOVESSSSSSSSSSS it.

I am a stay at home mommy too, and it even takes me about 3 days to get a full load of laundry done, thats how busy i am with everything!!! I definitely underestimated how much work being a stay at home mom is! I wouldnt change it for the world.... but i'm just saying it is VERY hard at times.

I am on 2 orals now also, and prednisone .. hoping i dont need to go on IV yet again! grrrrrrrrrrrrrrr
 

tinamarie4685

New member
Haley - I am in the same boat as you and it's SCARY. Its so hard to occupy Brianna while I have to do things (nebs, clean, go to the bathroom, shower!) while Kenny is at work. My pft dropped from 74% in late August to 65% as of last week. And I am doing all of my meds, everything. Sometimes i just let Brianna sit in her walker and whine while i do my treatments and i say "mommy has to do this to feel good". Even though she is only 6 months old and cant understand me LOL. Luckily, she LOVES the TV, so i throw on some channel called 'Noggin' and its all educational kid stuff, singing, cool colors. She LOVESSSSSSSSSSS it.

I am a stay at home mommy too, and it even takes me about 3 days to get a full load of laundry done, thats how busy i am with everything!!! I definitely underestimated how much work being a stay at home mom is! I wouldnt change it for the world.... but i'm just saying it is VERY hard at times.

I am on 2 orals now also, and prednisone .. hoping i dont need to go on IV yet again! grrrrrrrrrrrrrrr
 

tinamarie4685

New member
Haley - I am in the same boat as you and it's SCARY. Its so hard to occupy Brianna while I have to do things (nebs, clean, go to the bathroom, shower!) while Kenny is at work. My pft dropped from 74% in late August to 65% as of last week. And I am doing all of my meds, everything. Sometimes i just let Brianna sit in her walker and whine while i do my treatments and i say "mommy has to do this to feel good". Even though she is only 6 months old and cant understand me LOL. Luckily, she LOVES the TV, so i throw on some channel called 'Noggin' and its all educational kid stuff, singing, cool colors. She LOVESSSSSSSSSSS it.

I am a stay at home mommy too, and it even takes me about 3 days to get a full load of laundry done, thats how busy i am with everything!!! I definitely underestimated how much work being a stay at home mom is! I wouldnt change it for the world.... but i'm just saying it is VERY hard at times.

I am on 2 orals now also, and prednisone .. hoping i dont need to go on IV yet again! grrrrrrrrrrrrrrr
 

tinamarie4685

New member
Haley - I am in the same boat as you and it's SCARY. Its so hard to occupy Brianna while I have to do things (nebs, clean, go to the bathroom, shower!) while Kenny is at work. My pft dropped from 74% in late August to 65% as of last week. And I am doing all of my meds, everything. Sometimes i just let Brianna sit in her walker and whine while i do my treatments and i say "mommy has to do this to feel good". Even though she is only 6 months old and cant understand me LOL. Luckily, she LOVES the TV, so i throw on some channel called 'Noggin' and its all educational kid stuff, singing, cool colors. She LOVESSSSSSSSSSS it.

I am a stay at home mommy too, and it even takes me about 3 days to get a full load of laundry done, thats how busy i am with everything!!! I definitely underestimated how much work being a stay at home mom is! I wouldnt change it for the world.... but i'm just saying it is VERY hard at times.

I am on 2 orals now also, and prednisone .. hoping i dont need to go on IV yet again! grrrrrrrrrrrrrrr
 

tinamarie4685

New member
Haley - I am in the same boat as you and it's SCARY. Its so hard to occupy Brianna while I have to do things (nebs, clean, go to the bathroom, shower!) while Kenny is at work. My pft dropped from 74% in late August to 65% as of last week. And I am doing all of my meds, everything. Sometimes i just let Brianna sit in her walker and whine while i do my treatments and i say "mommy has to do this to feel good". Even though she is only 6 months old and cant understand me LOL. Luckily, she LOVES the TV, so i throw on some channel called 'Noggin' and its all educational kid stuff, singing, cool colors. She LOVESSSSSSSSSSS it.
<br />
<br />I am a stay at home mommy too, and it even takes me about 3 days to get a full load of laundry done, thats how busy i am with everything!!! I definitely underestimated how much work being a stay at home mom is! I wouldnt change it for the world.... but i'm just saying it is VERY hard at times.
<br />
<br />I am on 2 orals now also, and prednisone .. hoping i dont need to go on IV yet again! grrrrrrrrrrrrrrr
 

PedsNP2007

New member
Bonnie,

Did that woman have CF? If not, then she has NO IDEA what you go through. You need to focus on your health too, and if sleeping when Amelia sleeps is something that makes you less tired and less prone to wearing down, then go right ahead. Don't let anyone feel bad for doing something different. You have to do things that make things work for YOU and your family.

I don't believe in lots of tv watching, especially when kids are older and can read, etc. But if you have to amuse them, some tv is not bad. It's just not a routine activity that should be maintained. I am amazed at how much tv kids watch in their later childhood when they can be amusing themselves other ways (ie, reading, drawing, playing board games). But as a baby and toddler, that may be a good option to help you (and Tina) do treatments.

Keep up the good work!

Jenn
30 yo cf
 

PedsNP2007

New member
Bonnie,

Did that woman have CF? If not, then she has NO IDEA what you go through. You need to focus on your health too, and if sleeping when Amelia sleeps is something that makes you less tired and less prone to wearing down, then go right ahead. Don't let anyone feel bad for doing something different. You have to do things that make things work for YOU and your family.

I don't believe in lots of tv watching, especially when kids are older and can read, etc. But if you have to amuse them, some tv is not bad. It's just not a routine activity that should be maintained. I am amazed at how much tv kids watch in their later childhood when they can be amusing themselves other ways (ie, reading, drawing, playing board games). But as a baby and toddler, that may be a good option to help you (and Tina) do treatments.

Keep up the good work!

Jenn
30 yo cf
 

PedsNP2007

New member
Bonnie,

Did that woman have CF? If not, then she has NO IDEA what you go through. You need to focus on your health too, and if sleeping when Amelia sleeps is something that makes you less tired and less prone to wearing down, then go right ahead. Don't let anyone feel bad for doing something different. You have to do things that make things work for YOU and your family.

I don't believe in lots of tv watching, especially when kids are older and can read, etc. But if you have to amuse them, some tv is not bad. It's just not a routine activity that should be maintained. I am amazed at how much tv kids watch in their later childhood when they can be amusing themselves other ways (ie, reading, drawing, playing board games). But as a baby and toddler, that may be a good option to help you (and Tina) do treatments.

Keep up the good work!

Jenn
30 yo cf
 

PedsNP2007

New member
Bonnie,

Did that woman have CF? If not, then she has NO IDEA what you go through. You need to focus on your health too, and if sleeping when Amelia sleeps is something that makes you less tired and less prone to wearing down, then go right ahead. Don't let anyone feel bad for doing something different. You have to do things that make things work for YOU and your family.

I don't believe in lots of tv watching, especially when kids are older and can read, etc. But if you have to amuse them, some tv is not bad. It's just not a routine activity that should be maintained. I am amazed at how much tv kids watch in their later childhood when they can be amusing themselves other ways (ie, reading, drawing, playing board games). But as a baby and toddler, that may be a good option to help you (and Tina) do treatments.

Keep up the good work!

Jenn
30 yo cf
 

PedsNP2007

New member
Bonnie,
<br />
<br />Did that woman have CF? If not, then she has NO IDEA what you go through. You need to focus on your health too, and if sleeping when Amelia sleeps is something that makes you less tired and less prone to wearing down, then go right ahead. Don't let anyone feel bad for doing something different. You have to do things that make things work for YOU and your family.
<br />
<br />I don't believe in lots of tv watching, especially when kids are older and can read, etc. But if you have to amuse them, some tv is not bad. It's just not a routine activity that should be maintained. I am amazed at how much tv kids watch in their later childhood when they can be amusing themselves other ways (ie, reading, drawing, playing board games). But as a baby and toddler, that may be a good option to help you (and Tina) do treatments.
<br />
<br />Keep up the good work!
<br />
<br />Jenn
<br />30 yo cf
 

rubyroselee

New member
Haley,

It's hard work being a mom, isn't it? I really didn't think it was all that bad until the second kid arrived, but that was because Landon was such an easy baby.

I am also finding it very difficult to get all the things doen I need to do. It's so easy to just skip my treatments and go to bed at night. But what really helps me get through the day is a strict schedule. I work from 6am-2pm then when I come home with the boys it's a schedule right from the beginning. I do house work for the first couple hours in between playing with them, then I cook and we eat dinner at 5pm, then I do bath time, then I do my treatments afterwards at about 7pm, then it's wind-down time, feed the baby, and then they're both sleeping by 8:30-9pm. Once they go to sleep I do homework. I just have to let them entertain themselves while I make dinner, do my treatments, etc.

I realy wish I had more time to myself and more time to do things around the house, but I don't. I think I've had to let that go and realize I can't be supermom.

I think you just have to be able to do what you can and realize that's the best you can do. You have to take care of yourself and your family first.

Is winter a bad time of year for you? It tends to be the season that I get sick every year. So I really think I need to cut some things out if I'm going to stay healthy this year.

Can you ask for more help from your mom? Would she be able to watch Morgan for a half day or a full day so that you can rest or do housework? We are enrolling Landon in part-time daycare just for that reason. We want to be able to spend more time with Gavin and be able to do housework. Plus it will be good for his social skills and it will give him something to do this winter besides being cooped up in the house all the time.

Good luck with getting your PFTs back up. Try to rest when you can. I know it's hard with Dustin gone for long periods of time. Take care.
 

rubyroselee

New member
Haley,

It's hard work being a mom, isn't it? I really didn't think it was all that bad until the second kid arrived, but that was because Landon was such an easy baby.

I am also finding it very difficult to get all the things doen I need to do. It's so easy to just skip my treatments and go to bed at night. But what really helps me get through the day is a strict schedule. I work from 6am-2pm then when I come home with the boys it's a schedule right from the beginning. I do house work for the first couple hours in between playing with them, then I cook and we eat dinner at 5pm, then I do bath time, then I do my treatments afterwards at about 7pm, then it's wind-down time, feed the baby, and then they're both sleeping by 8:30-9pm. Once they go to sleep I do homework. I just have to let them entertain themselves while I make dinner, do my treatments, etc.

I realy wish I had more time to myself and more time to do things around the house, but I don't. I think I've had to let that go and realize I can't be supermom.

I think you just have to be able to do what you can and realize that's the best you can do. You have to take care of yourself and your family first.

Is winter a bad time of year for you? It tends to be the season that I get sick every year. So I really think I need to cut some things out if I'm going to stay healthy this year.

Can you ask for more help from your mom? Would she be able to watch Morgan for a half day or a full day so that you can rest or do housework? We are enrolling Landon in part-time daycare just for that reason. We want to be able to spend more time with Gavin and be able to do housework. Plus it will be good for his social skills and it will give him something to do this winter besides being cooped up in the house all the time.

Good luck with getting your PFTs back up. Try to rest when you can. I know it's hard with Dustin gone for long periods of time. Take care.
 

rubyroselee

New member
Haley,

It's hard work being a mom, isn't it? I really didn't think it was all that bad until the second kid arrived, but that was because Landon was such an easy baby.

I am also finding it very difficult to get all the things doen I need to do. It's so easy to just skip my treatments and go to bed at night. But what really helps me get through the day is a strict schedule. I work from 6am-2pm then when I come home with the boys it's a schedule right from the beginning. I do house work for the first couple hours in between playing with them, then I cook and we eat dinner at 5pm, then I do bath time, then I do my treatments afterwards at about 7pm, then it's wind-down time, feed the baby, and then they're both sleeping by 8:30-9pm. Once they go to sleep I do homework. I just have to let them entertain themselves while I make dinner, do my treatments, etc.

I realy wish I had more time to myself and more time to do things around the house, but I don't. I think I've had to let that go and realize I can't be supermom.

I think you just have to be able to do what you can and realize that's the best you can do. You have to take care of yourself and your family first.

Is winter a bad time of year for you? It tends to be the season that I get sick every year. So I really think I need to cut some things out if I'm going to stay healthy this year.

Can you ask for more help from your mom? Would she be able to watch Morgan for a half day or a full day so that you can rest or do housework? We are enrolling Landon in part-time daycare just for that reason. We want to be able to spend more time with Gavin and be able to do housework. Plus it will be good for his social skills and it will give him something to do this winter besides being cooped up in the house all the time.

Good luck with getting your PFTs back up. Try to rest when you can. I know it's hard with Dustin gone for long periods of time. Take care.
 

rubyroselee

New member
Haley,

It's hard work being a mom, isn't it? I really didn't think it was all that bad until the second kid arrived, but that was because Landon was such an easy baby.

I am also finding it very difficult to get all the things doen I need to do. It's so easy to just skip my treatments and go to bed at night. But what really helps me get through the day is a strict schedule. I work from 6am-2pm then when I come home with the boys it's a schedule right from the beginning. I do house work for the first couple hours in between playing with them, then I cook and we eat dinner at 5pm, then I do bath time, then I do my treatments afterwards at about 7pm, then it's wind-down time, feed the baby, and then they're both sleeping by 8:30-9pm. Once they go to sleep I do homework. I just have to let them entertain themselves while I make dinner, do my treatments, etc.

I realy wish I had more time to myself and more time to do things around the house, but I don't. I think I've had to let that go and realize I can't be supermom.

I think you just have to be able to do what you can and realize that's the best you can do. You have to take care of yourself and your family first.

Is winter a bad time of year for you? It tends to be the season that I get sick every year. So I really think I need to cut some things out if I'm going to stay healthy this year.

Can you ask for more help from your mom? Would she be able to watch Morgan for a half day or a full day so that you can rest or do housework? We are enrolling Landon in part-time daycare just for that reason. We want to be able to spend more time with Gavin and be able to do housework. Plus it will be good for his social skills and it will give him something to do this winter besides being cooped up in the house all the time.

Good luck with getting your PFTs back up. Try to rest when you can. I know it's hard with Dustin gone for long periods of time. Take care.
 

rubyroselee

New member
Haley,
<br />
<br />It's hard work being a mom, isn't it? I really didn't think it was all that bad until the second kid arrived, but that was because Landon was such an easy baby.
<br />
<br />I am also finding it very difficult to get all the things doen I need to do. It's so easy to just skip my treatments and go to bed at night. But what really helps me get through the day is a strict schedule. I work from 6am-2pm then when I come home with the boys it's a schedule right from the beginning. I do house work for the first couple hours in between playing with them, then I cook and we eat dinner at 5pm, then I do bath time, then I do my treatments afterwards at about 7pm, then it's wind-down time, feed the baby, and then they're both sleeping by 8:30-9pm. Once they go to sleep I do homework. I just have to let them entertain themselves while I make dinner, do my treatments, etc.
<br />
<br />I realy wish I had more time to myself and more time to do things around the house, but I don't. I think I've had to let that go and realize I can't be supermom.
<br />
<br />I think you just have to be able to do what you can and realize that's the best you can do. You have to take care of yourself and your family first.
<br />
<br />Is winter a bad time of year for you? It tends to be the season that I get sick every year. So I really think I need to cut some things out if I'm going to stay healthy this year.
<br />
<br />Can you ask for more help from your mom? Would she be able to watch Morgan for a half day or a full day so that you can rest or do housework? We are enrolling Landon in part-time daycare just for that reason. We want to be able to spend more time with Gavin and be able to do housework. Plus it will be good for his social skills and it will give him something to do this winter besides being cooped up in the house all the time.
<br />
<br />Good luck with getting your PFTs back up. Try to rest when you can. I know it's hard with Dustin gone for long periods of time. Take care.
 

mom2lillian

New member
I was a slacker before having kids and the first 4 weeks of Lillian's life. THEN I realized how selfish that was. My feeling is that I knew the risk of my early death when having LIllian if I am going to choose to bring her into this world anyway then I had better be prepared to do everythign in my power to stay here as long as possible. No exceptions. This means my treatments, excercise, as much sleep as possible (bonniebaby <img src="i/expressions/face-icon-small-happy.gif" border="0">), and eating right (I've admittedly been slacking on this lately).

I have never been a stay at home mom so I cant help you on that venue however if I had to choose between school, my health, and my child I guess you know which one would go. If you dont have to choose--meaning you think you can do it all, then get yourself into a routine NOW. If I were you I would set myself a date, "I have until x time to achieve x goals" and if you dont then school goes. Meaning perhaps having a tracking sheet on your fridge for treatments etc to say you have to be consistent etc.

Sorry to be harsh but its just reality, we dont have the right to slack when we choose this route.

If I am thinking of missing a treatment etc the trick I use for myself is to imagine having to stay in hospital for a week without Lillian or I imagine myself missing her graduation by a year or so and thinking hmm if only I had been more compliant. This may seem harsh as well but this is the 'self talk' if you will that I use--not suggesting it is for everyone.


I do understnad not having time for everything I have recently decided that if we decide to have another kid I will go part time then.

I am in room doing treatments now and my duaghter is playing, one thing I do is have special things in room I do treatments and she really only gets them when I am doign treatments so if it is a day like today where she says, "no mommies medicine" I have fun stuff to pull out and suddenly she really wants mommy to do her medicine. That of course wont work with younger kids but back then I would entertain her what I could but let her fuss if I needed to, it wont hurt them but you getting sick will.
 

mom2lillian

New member
I was a slacker before having kids and the first 4 weeks of Lillian's life. THEN I realized how selfish that was. My feeling is that I knew the risk of my early death when having LIllian if I am going to choose to bring her into this world anyway then I had better be prepared to do everythign in my power to stay here as long as possible. No exceptions. This means my treatments, excercise, as much sleep as possible (bonniebaby <img src="i/expressions/face-icon-small-happy.gif" border="0">), and eating right (I've admittedly been slacking on this lately).

I have never been a stay at home mom so I cant help you on that venue however if I had to choose between school, my health, and my child I guess you know which one would go. If you dont have to choose--meaning you think you can do it all, then get yourself into a routine NOW. If I were you I would set myself a date, "I have until x time to achieve x goals" and if you dont then school goes. Meaning perhaps having a tracking sheet on your fridge for treatments etc to say you have to be consistent etc.

Sorry to be harsh but its just reality, we dont have the right to slack when we choose this route.

If I am thinking of missing a treatment etc the trick I use for myself is to imagine having to stay in hospital for a week without Lillian or I imagine myself missing her graduation by a year or so and thinking hmm if only I had been more compliant. This may seem harsh as well but this is the 'self talk' if you will that I use--not suggesting it is for everyone.


I do understnad not having time for everything I have recently decided that if we decide to have another kid I will go part time then.

I am in room doing treatments now and my duaghter is playing, one thing I do is have special things in room I do treatments and she really only gets them when I am doign treatments so if it is a day like today where she says, "no mommies medicine" I have fun stuff to pull out and suddenly she really wants mommy to do her medicine. That of course wont work with younger kids but back then I would entertain her what I could but let her fuss if I needed to, it wont hurt them but you getting sick will.
 

mom2lillian

New member
I was a slacker before having kids and the first 4 weeks of Lillian's life. THEN I realized how selfish that was. My feeling is that I knew the risk of my early death when having LIllian if I am going to choose to bring her into this world anyway then I had better be prepared to do everythign in my power to stay here as long as possible. No exceptions. This means my treatments, excercise, as much sleep as possible (bonniebaby <img src="i/expressions/face-icon-small-happy.gif" border="0">), and eating right (I've admittedly been slacking on this lately).

I have never been a stay at home mom so I cant help you on that venue however if I had to choose between school, my health, and my child I guess you know which one would go. If you dont have to choose--meaning you think you can do it all, then get yourself into a routine NOW. If I were you I would set myself a date, "I have until x time to achieve x goals" and if you dont then school goes. Meaning perhaps having a tracking sheet on your fridge for treatments etc to say you have to be consistent etc.

Sorry to be harsh but its just reality, we dont have the right to slack when we choose this route.

If I am thinking of missing a treatment etc the trick I use for myself is to imagine having to stay in hospital for a week without Lillian or I imagine myself missing her graduation by a year or so and thinking hmm if only I had been more compliant. This may seem harsh as well but this is the 'self talk' if you will that I use--not suggesting it is for everyone.


I do understnad not having time for everything I have recently decided that if we decide to have another kid I will go part time then.

I am in room doing treatments now and my duaghter is playing, one thing I do is have special things in room I do treatments and she really only gets them when I am doign treatments so if it is a day like today where she says, "no mommies medicine" I have fun stuff to pull out and suddenly she really wants mommy to do her medicine. That of course wont work with younger kids but back then I would entertain her what I could but let her fuss if I needed to, it wont hurt them but you getting sick will.
 

mom2lillian

New member
I was a slacker before having kids and the first 4 weeks of Lillian's life. THEN I realized how selfish that was. My feeling is that I knew the risk of my early death when having LIllian if I am going to choose to bring her into this world anyway then I had better be prepared to do everythign in my power to stay here as long as possible. No exceptions. This means my treatments, excercise, as much sleep as possible (bonniebaby <img src="i/expressions/face-icon-small-happy.gif" border="0">), and eating right (I've admittedly been slacking on this lately).

I have never been a stay at home mom so I cant help you on that venue however if I had to choose between school, my health, and my child I guess you know which one would go. If you dont have to choose--meaning you think you can do it all, then get yourself into a routine NOW. If I were you I would set myself a date, "I have until x time to achieve x goals" and if you dont then school goes. Meaning perhaps having a tracking sheet on your fridge for treatments etc to say you have to be consistent etc.

Sorry to be harsh but its just reality, we dont have the right to slack when we choose this route.

If I am thinking of missing a treatment etc the trick I use for myself is to imagine having to stay in hospital for a week without Lillian or I imagine myself missing her graduation by a year or so and thinking hmm if only I had been more compliant. This may seem harsh as well but this is the 'self talk' if you will that I use--not suggesting it is for everyone.


I do understnad not having time for everything I have recently decided that if we decide to have another kid I will go part time then.

I am in room doing treatments now and my duaghter is playing, one thing I do is have special things in room I do treatments and she really only gets them when I am doign treatments so if it is a day like today where she says, "no mommies medicine" I have fun stuff to pull out and suddenly she really wants mommy to do her medicine. That of course wont work with younger kids but back then I would entertain her what I could but let her fuss if I needed to, it wont hurt them but you getting sick will.
 

mom2lillian

New member
I was a slacker before having kids and the first 4 weeks of Lillian's life. THEN I realized how selfish that was. My feeling is that I knew the risk of my early death when having LIllian if I am going to choose to bring her into this world anyway then I had better be prepared to do everythign in my power to stay here as long as possible. No exceptions. This means my treatments, excercise, as much sleep as possible (bonniebaby <img src="i/expressions/face-icon-small-happy.gif" border="0">), and eating right (I've admittedly been slacking on this lately).
<br />
<br />I have never been a stay at home mom so I cant help you on that venue however if I had to choose between school, my health, and my child I guess you know which one would go. If you dont have to choose--meaning you think you can do it all, then get yourself into a routine NOW. If I were you I would set myself a date, "I have until x time to achieve x goals" and if you dont then school goes. Meaning perhaps having a tracking sheet on your fridge for treatments etc to say you have to be consistent etc.
<br />
<br />Sorry to be harsh but its just reality, we dont have the right to slack when we choose this route.
<br />
<br />If I am thinking of missing a treatment etc the trick I use for myself is to imagine having to stay in hospital for a week without Lillian or I imagine myself missing her graduation by a year or so and thinking hmm if only I had been more compliant. This may seem harsh as well but this is the 'self talk' if you will that I use--not suggesting it is for everyone.
<br />
<br />
<br />I do understnad not having time for everything I have recently decided that if we decide to have another kid I will go part time then.
<br />
<br />I am in room doing treatments now and my duaghter is playing, one thing I do is have special things in room I do treatments and she really only gets them when I am doign treatments so if it is a day like today where she says, "no mommies medicine" I have fun stuff to pull out and suddenly she really wants mommy to do her medicine. That of course wont work with younger kids but back then I would entertain her what I could but let her fuss if I needed to, it wont hurt them but you getting sick will.
 
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