Moms w/Cf- Coping with Tuneups

[Jeana]

I'm sorry you are having a tough time. <img src="i/expressions/face-icon-small-sad.gif" border="0">

I wonder how many are out there that feel like they are exhausting all of their friend support. Especially if you don't have family close. I had to have two friends watch my four-year-old for two weeks at a time, due to hospitalizations this year. I wonder what I will do next time...

Well, I am lucky if I fit in a Vest treatment, let alone get exercise. Although I am thinking about getting Wii Fit to keep my son occupied/involved while I try to increase my lung function. Has anyone tried it?

During treatments, I can put my 6-week-old in my sling and my 4-year-old and I can play preschool games on the computer or pick out pictures to send via email to the grandparents.

I know what you mean about enjoying your summer. I'm beginning to thinking that summer's the best thing about teaching. LOL Although, I don't know what I'd do if I needed another tuneup now. It's all I can do to teach, come home and feed the baby, do a treatment, cook and eat dinner, feed the baby, zone on the couch for a while, do the bedtime routine for my 4-year-old, feed the baby, shower, do a treatment, eat a snack, feed the baby and go to bed for 6 hours (minus nightime feedings), just to wake up and do it all over again. Thank goodness it's Friday! I can try to catch up on my cleaning.

 

[Jeana]

I'm sorry you are having a tough time. <img src="i/expressions/face-icon-small-sad.gif" border="0">

I wonder how many are out there that feel like they are exhausting all of their friend support. Especially if you don't have family close. I had to have two friends watch my four-year-old for two weeks at a time, due to hospitalizations this year. I wonder what I will do next time...

Well, I am lucky if I fit in a Vest treatment, let alone get exercise. Although I am thinking about getting Wii Fit to keep my son occupied/involved while I try to increase my lung function. Has anyone tried it?

During treatments, I can put my 6-week-old in my sling and my 4-year-old and I can play preschool games on the computer or pick out pictures to send via email to the grandparents.

I know what you mean about enjoying your summer. I'm beginning to thinking that summer's the best thing about teaching. LOL Although, I don't know what I'd do if I needed another tuneup now. It's all I can do to teach, come home and feed the baby, do a treatment, cook and eat dinner, feed the baby, zone on the couch for a while, do the bedtime routine for my 4-year-old, feed the baby, shower, do a treatment, eat a snack, feed the baby and go to bed for 6 hours (minus nightime feedings), just to wake up and do it all over again. Thank goodness it's Friday! I can try to catch up on my cleaning.

 

[Jeana]

I'm sorry you are having a tough time. <img src="i/expressions/face-icon-small-sad.gif" border="0">

I wonder how many are out there that feel like they are exhausting all of their friend support. Especially if you don't have family close. I had to have two friends watch my four-year-old for two weeks at a time, due to hospitalizations this year. I wonder what I will do next time...

Well, I am lucky if I fit in a Vest treatment, let alone get exercise. Although I am thinking about getting Wii Fit to keep my son occupied/involved while I try to increase my lung function. Has anyone tried it?

During treatments, I can put my 6-week-old in my sling and my 4-year-old and I can play preschool games on the computer or pick out pictures to send via email to the grandparents.

I know what you mean about enjoying your summer. I'm beginning to thinking that summer's the best thing about teaching. LOL Although, I don't know what I'd do if I needed another tuneup now. It's all I can do to teach, come home and feed the baby, do a treatment, cook and eat dinner, feed the baby, zone on the couch for a while, do the bedtime routine for my 4-year-old, feed the baby, shower, do a treatment, eat a snack, feed the baby and go to bed for 6 hours (minus nightime feedings), just to wake up and do it all over again. Thank goodness it's Friday! I can try to catch up on my cleaning.

 

[Jeana]

I'm sorry you are having a tough time. <img src="i/expressions/face-icon-small-sad.gif" border="0">

I wonder how many are out there that feel like they are exhausting all of their friend support. Especially if you don't have family close. I had to have two friends watch my four-year-old for two weeks at a time, due to hospitalizations this year. I wonder what I will do next time...

Well, I am lucky if I fit in a Vest treatment, let alone get exercise. Although I am thinking about getting Wii Fit to keep my son occupied/involved while I try to increase my lung function. Has anyone tried it?

During treatments, I can put my 6-week-old in my sling and my 4-year-old and I can play preschool games on the computer or pick out pictures to send via email to the grandparents.

I know what you mean about enjoying your summer. I'm beginning to thinking that summer's the best thing about teaching. LOL Although, I don't know what I'd do if I needed another tuneup now. It's all I can do to teach, come home and feed the baby, do a treatment, cook and eat dinner, feed the baby, zone on the couch for a while, do the bedtime routine for my 4-year-old, feed the baby, shower, do a treatment, eat a snack, feed the baby and go to bed for 6 hours (minus nightime feedings), just to wake up and do it all over again. Thank goodness it's Friday! I can try to catch up on my cleaning.

 

[Jeana]

I'm sorry you are having a tough time. <img src="i/expressions/face-icon-small-sad.gif" border="0">
<br />
<br />I wonder how many are out there that feel like they are exhausting all of their friend support. Especially if you don't have family close. I had to have two friends watch my four-year-old for two weeks at a time, due to hospitalizations this year. I wonder what I will do next time...
<br />
<br />Well, I am lucky if I fit in a Vest treatment, let alone get exercise. Although I am thinking about getting Wii Fit to keep my son occupied/involved while I try to increase my lung function. Has anyone tried it?
<br />
<br />During treatments, I can put my 6-week-old in my sling and my 4-year-old and I can play preschool games on the computer or pick out pictures to send via email to the grandparents.
<br />
<br />I know what you mean about enjoying your summer. I'm beginning to thinking that summer's the best thing about teaching. LOL Although, I don't know what I'd do if I needed another tuneup now. It's all I can do to teach, come home and feed the baby, do a treatment, cook and eat dinner, feed the baby, zone on the couch for a while, do the bedtime routine for my 4-year-old, feed the baby, shower, do a treatment, eat a snack, feed the baby and go to bed for 6 hours (minus nightime feedings), just to wake up and do it all over again. Thank goodness it's Friday! I can try to catch up on my cleaning.

 

[Jeana]

Ooops! Can I get rid of the second message? I thought I accidentally hit cancel and lost it, so I typed it again.

 

[Jeana]

Ooops! Can I get rid of the second message? I thought I accidentally hit cancel and lost it, so I typed it again.

 

[Jeana]

Ooops! Can I get rid of the second message? I thought I accidentally hit cancel and lost it, so I typed it again.

 

[Jeana]

Ooops! Can I get rid of the second message? I thought I accidentally hit cancel and lost it, so I typed it again.

 

[Jeana]

Ooops! Can I get rid of the second message? I thought I accidentally hit cancel and lost it, so I typed it again.

 

[Skye]

Wow....this sounds a bit like my life and I too feel like I exhaust my friend resources with no family close by. I have also decided to do a spring tune-up because my numbers have slipped a bit and also some sinus issues. Just the PICC placement became a trauma and I still don't have it...I go in again on Mon.

I think the hardest thing about being a mommy and a CFer is that you have to do the mommy part like all other moms and then the CF part is the secret part that no one understands or can even relate to that consumes as much time if not more than having a child does. CF screams and crys all the time for attention!

I will tell you it gets much easier when they get older. My daughter is 9 and she is very helpful during these times and can do things for herself. I didn't have a PICC ever when she was very little. I think that would be very difficult.

 

[Skye]

Wow....this sounds a bit like my life and I too feel like I exhaust my friend resources with no family close by. I have also decided to do a spring tune-up because my numbers have slipped a bit and also some sinus issues. Just the PICC placement became a trauma and I still don't have it...I go in again on Mon.

I think the hardest thing about being a mommy and a CFer is that you have to do the mommy part like all other moms and then the CF part is the secret part that no one understands or can even relate to that consumes as much time if not more than having a child does. CF screams and crys all the time for attention!

I will tell you it gets much easier when they get older. My daughter is 9 and she is very helpful during these times and can do things for herself. I didn't have a PICC ever when she was very little. I think that would be very difficult.

 

[Skye]

Wow....this sounds a bit like my life and I too feel like I exhaust my friend resources with no family close by. I have also decided to do a spring tune-up because my numbers have slipped a bit and also some sinus issues. Just the PICC placement became a trauma and I still don't have it...I go in again on Mon.

I think the hardest thing about being a mommy and a CFer is that you have to do the mommy part like all other moms and then the CF part is the secret part that no one understands or can even relate to that consumes as much time if not more than having a child does. CF screams and crys all the time for attention!

I will tell you it gets much easier when they get older. My daughter is 9 and she is very helpful during these times and can do things for herself. I didn't have a PICC ever when she was very little. I think that would be very difficult.

 

[Skye]

Wow....this sounds a bit like my life and I too feel like I exhaust my friend resources with no family close by. I have also decided to do a spring tune-up because my numbers have slipped a bit and also some sinus issues. Just the PICC placement became a trauma and I still don't have it...I go in again on Mon.

I think the hardest thing about being a mommy and a CFer is that you have to do the mommy part like all other moms and then the CF part is the secret part that no one understands or can even relate to that consumes as much time if not more than having a child does. CF screams and crys all the time for attention!

I will tell you it gets much easier when they get older. My daughter is 9 and she is very helpful during these times and can do things for herself. I didn't have a PICC ever when she was very little. I think that would be very difficult.

 

[Skye]

Wow....this sounds a bit like my life and I too feel like I exhaust my friend resources with no family close by. I have also decided to do a spring tune-up because my numbers have slipped a bit and also some sinus issues. Just the PICC placement became a trauma and I still don't have it...I go in again on Mon.
<br />
<br />I think the hardest thing about being a mommy and a CFer is that you have to do the mommy part like all other moms and then the CF part is the secret part that no one understands or can even relate to that consumes as much time if not more than having a child does. CF screams and crys all the time for attention!
<br />
<br />I will tell you it gets much easier when they get older. My daughter is 9 and she is very helpful during these times and can do things for herself. I didn't have a PICC ever when she was very little. I think that would be very difficult.

 

[TIN]

im posting this again, with a brief update, to give it a bump... i put it the pregnancy section a few weeks ago. for anyone who didn't see it last time. thanks for reading:

For those of you who are already moms and dads... wanted to let you know about an event i'm putting together for next fall - on Sunday October 18th. I'm a mom with cf and i'm also a social worker. I brought this idea to a local family service agency and they're agreed to help me make this a reality!

Its going to be a fall festival/family day for parents with chronic illness and their kids. We will have expert speakers and workshops for parents on things like talking to your kids about your illness, making your routine part of your family's normal, how to handle hospitalizations,etc. For the kids there will be art therapy, yoga/movement/stress relief and age appropriate workshops. All this plus pure family fun time -- with fall activities like hay rides, apple bobbing, pumpkin decorating, etc.

I'm writing to mention it now for a few reasons:
1. First I want to know if an event like this would interest any of you?

2. If so, trying to figure out how to make it accessible for you, wherever you're living... The event will take place at a beautiful camp in a suburb of Milwaukee, Wisconsin. We're looking into funding sources now and if there's a lot of interest, we would aim to set up a scholarship to help people travel to be here. The event itself will be totally free! *infection control precautions/restrictions would apply for patients with cepacia and MRSA.

3. Wondering if people who couldn't attend in person would be interested in viewing the speaker portion of the event if we were to tape it and make dvd's available for free or post the video online?

Would love your feedback!!! Thanks so much.

 

[TIN]

im posting this again, with a brief update, to give it a bump... i put it the pregnancy section a few weeks ago. for anyone who didn't see it last time. thanks for reading:

For those of you who are already moms and dads... wanted to let you know about an event i'm putting together for next fall - on Sunday October 18th. I'm a mom with cf and i'm also a social worker. I brought this idea to a local family service agency and they're agreed to help me make this a reality!

Its going to be a fall festival/family day for parents with chronic illness and their kids. We will have expert speakers and workshops for parents on things like talking to your kids about your illness, making your routine part of your family's normal, how to handle hospitalizations,etc. For the kids there will be art therapy, yoga/movement/stress relief and age appropriate workshops. All this plus pure family fun time -- with fall activities like hay rides, apple bobbing, pumpkin decorating, etc.

I'm writing to mention it now for a few reasons:
1. First I want to know if an event like this would interest any of you?

2. If so, trying to figure out how to make it accessible for you, wherever you're living... The event will take place at a beautiful camp in a suburb of Milwaukee, Wisconsin. We're looking into funding sources now and if there's a lot of interest, we would aim to set up a scholarship to help people travel to be here. The event itself will be totally free! *infection control precautions/restrictions would apply for patients with cepacia and MRSA.

3. Wondering if people who couldn't attend in person would be interested in viewing the speaker portion of the event if we were to tape it and make dvd's available for free or post the video online?

Would love your feedback!!! Thanks so much.

 

[TIN]

im posting this again, with a brief update, to give it a bump... i put it the pregnancy section a few weeks ago. for anyone who didn't see it last time. thanks for reading:

For those of you who are already moms and dads... wanted to let you know about an event i'm putting together for next fall - on Sunday October 18th. I'm a mom with cf and i'm also a social worker. I brought this idea to a local family service agency and they're agreed to help me make this a reality!

Its going to be a fall festival/family day for parents with chronic illness and their kids. We will have expert speakers and workshops for parents on things like talking to your kids about your illness, making your routine part of your family's normal, how to handle hospitalizations,etc. For the kids there will be art therapy, yoga/movement/stress relief and age appropriate workshops. All this plus pure family fun time -- with fall activities like hay rides, apple bobbing, pumpkin decorating, etc.

I'm writing to mention it now for a few reasons:
1. First I want to know if an event like this would interest any of you?

2. If so, trying to figure out how to make it accessible for you, wherever you're living... The event will take place at a beautiful camp in a suburb of Milwaukee, Wisconsin. We're looking into funding sources now and if there's a lot of interest, we would aim to set up a scholarship to help people travel to be here. The event itself will be totally free! *infection control precautions/restrictions would apply for patients with cepacia and MRSA.

3. Wondering if people who couldn't attend in person would be interested in viewing the speaker portion of the event if we were to tape it and make dvd's available for free or post the video online?

Would love your feedback!!! Thanks so much.

 

[TIN]

im posting this again, with a brief update, to give it a bump... i put it the pregnancy section a few weeks ago. for anyone who didn't see it last time. thanks for reading:

For those of you who are already moms and dads... wanted to let you know about an event i'm putting together for next fall - on Sunday October 18th. I'm a mom with cf and i'm also a social worker. I brought this idea to a local family service agency and they're agreed to help me make this a reality!

Its going to be a fall festival/family day for parents with chronic illness and their kids. We will have expert speakers and workshops for parents on things like talking to your kids about your illness, making your routine part of your family's normal, how to handle hospitalizations,etc. For the kids there will be art therapy, yoga/movement/stress relief and age appropriate workshops. All this plus pure family fun time -- with fall activities like hay rides, apple bobbing, pumpkin decorating, etc.

I'm writing to mention it now for a few reasons:
1. First I want to know if an event like this would interest any of you?

2. If so, trying to figure out how to make it accessible for you, wherever you're living... The event will take place at a beautiful camp in a suburb of Milwaukee, Wisconsin. We're looking into funding sources now and if there's a lot of interest, we would aim to set up a scholarship to help people travel to be here. The event itself will be totally free! *infection control precautions/restrictions would apply for patients with cepacia and MRSA.

3. Wondering if people who couldn't attend in person would be interested in viewing the speaker portion of the event if we were to tape it and make dvd's available for free or post the video online?

Would love your feedback!!! Thanks so much.

 

[TIN]

im posting this again, with a brief update, to give it a bump... i put it the pregnancy section a few weeks ago. for anyone who didn't see it last time. thanks for reading:
<br />
<br />For those of you who are already moms and dads... wanted to let you know about an event i'm putting together for next fall - on Sunday October 18th. I'm a mom with cf and i'm also a social worker. I brought this idea to a local family service agency and they're agreed to help me make this a reality!
<br />
<br />Its going to be a fall festival/family day for parents with chronic illness and their kids. We will have expert speakers and workshops for parents on things like talking to your kids about your illness, making your routine part of your family's normal, how to handle hospitalizations,etc. For the kids there will be art therapy, yoga/movement/stress relief and age appropriate workshops. All this plus pure family fun time -- with fall activities like hay rides, apple bobbing, pumpkin decorating, etc.
<br />
<br />I'm writing to mention it now for a few reasons:
<br />1. First I want to know if an event like this would interest any of you?
<br />
<br />2. If so, trying to figure out how to make it accessible for you, wherever you're living... The event will take place at a beautiful camp in a suburb of Milwaukee, Wisconsin. We're looking into funding sources now and if there's a lot of interest, we would aim to set up a scholarship to help people travel to be here. The event itself will be totally free! *infection control precautions/restrictions would apply for patients with cepacia and MRSA.
<br />
<br />3. Wondering if people who couldn't attend in person would be interested in viewing the speaker portion of the event if we were to tape it and make dvd's available for free or post the video online?
<br />
<br />Would love your feedback!!! Thanks so much.