I need advice

holmfamily1992 · May 4, 2008

How do or can I handle my children with CF staying the night away from home? What about his treatments?? Can I trust someone else to make sure he takes his meds and is that fair for me to do??

This is all still so new!!

Tina

holmfamily1992 · May 4, 2008

How do or can I handle my children with CF staying the night away from home? What about his treatments?? Can I trust someone else to make sure he takes his meds and is that fair for me to do??

This is all still so new!!

Tina

holmfamily1992 · May 4, 2008

How do or can I handle my children with CF staying the night away from home? What about his treatments?? Can I trust someone else to make sure he takes his meds and is that fair for me to do??

This is all still so new!!

Tina

holmfamily1992 · May 4, 2008

How do or can I handle my children with CF staying the night away from home? What about his treatments?? Can I trust someone else to make sure he takes his meds and is that fair for me to do??

This is all still so new!!

Tina

holmfamily1992 · May 4, 2008

How do or can I handle my children with CF staying the night away from home? What about his treatments?? Can I trust someone else to make sure he takes his meds and is that fair for me to do??
 
 This is all still so new!!
 
 Tina

Jane · May 4, 2008

Tina, how old is your son? It is always a risk letting your kids go somewhere overnight. But we always think that the benfits outweigh the risks. We want our kids to be as "normal" as possible, so we have encouraged them to participate in as much as they are able. Sometimes you can adjust treatment times to before or after the sleepover.

We sent my son to a sleepover with a PICC line once. It was a responsible family we've known since Josh was born so we felt confident in their ability to keep him safe. I drove over at midnight to give him his 12:00 dose. We drove around in the car so he wouldn't have to be hooked up in front of the other kids.

He's also been to week-long scout camp with his nightly g-tube feeds and nebs. I drove over every morning (once he went to class)to replenish the supplies. You do what you have to do. We believe having CF shouldn't take away their childhood.

But, of course, you worry your head off while they're gone.<img src="i/expressions/face-icon-small-wink.gif" border="0">

Jane · May 4, 2008

Tina, how old is your son? It is always a risk letting your kids go somewhere overnight. But we always think that the benfits outweigh the risks. We want our kids to be as "normal" as possible, so we have encouraged them to participate in as much as they are able. Sometimes you can adjust treatment times to before or after the sleepover.

We sent my son to a sleepover with a PICC line once. It was a responsible family we've known since Josh was born so we felt confident in their ability to keep him safe. I drove over at midnight to give him his 12:00 dose. We drove around in the car so he wouldn't have to be hooked up in front of the other kids.

He's also been to week-long scout camp with his nightly g-tube feeds and nebs. I drove over every morning (once he went to class)to replenish the supplies. You do what you have to do. We believe having CF shouldn't take away their childhood.

But, of course, you worry your head off while they're gone.<img src="i/expressions/face-icon-small-wink.gif" border="0">

Jane · May 4, 2008

Tina, how old is your son? It is always a risk letting your kids go somewhere overnight. But we always think that the benfits outweigh the risks. We want our kids to be as "normal" as possible, so we have encouraged them to participate in as much as they are able. Sometimes you can adjust treatment times to before or after the sleepover.

We sent my son to a sleepover with a PICC line once. It was a responsible family we've known since Josh was born so we felt confident in their ability to keep him safe. I drove over at midnight to give him his 12:00 dose. We drove around in the car so he wouldn't have to be hooked up in front of the other kids.

He's also been to week-long scout camp with his nightly g-tube feeds and nebs. I drove over every morning (once he went to class)to replenish the supplies. You do what you have to do. We believe having CF shouldn't take away their childhood.

But, of course, you worry your head off while they're gone.<img src="i/expressions/face-icon-small-wink.gif" border="0">

Jane · May 4, 2008

Tina, how old is your son? It is always a risk letting your kids go somewhere overnight. But we always think that the benfits outweigh the risks. We want our kids to be as "normal" as possible, so we have encouraged them to participate in as much as they are able. Sometimes you can adjust treatment times to before or after the sleepover.

We sent my son to a sleepover with a PICC line once. It was a responsible family we've known since Josh was born so we felt confident in their ability to keep him safe. I drove over at midnight to give him his 12:00 dose. We drove around in the car so he wouldn't have to be hooked up in front of the other kids.

He's also been to week-long scout camp with his nightly g-tube feeds and nebs. I drove over every morning (once he went to class)to replenish the supplies. You do what you have to do. We believe having CF shouldn't take away their childhood.

But, of course, you worry your head off while they're gone.<img src="i/expressions/face-icon-small-wink.gif" border="0">

Jane · May 4, 2008

Tina, how old is your son? It is always a risk letting your kids go somewhere overnight. But we always think that the benfits outweigh the risks. We want our kids to be as "normal" as possible, so we have encouraged them to participate in as much as they are able. Sometimes you can adjust treatment times to before or after the sleepover.
 
 We sent my son to a sleepover with a PICC line once. It was a responsible family we've known since Josh was born so we felt confident in their ability to keep him safe. I drove over at midnight to give him his 12:00 dose. We drove around in the car so he wouldn't have to be hooked up in front of the other kids.
 
 He's also been to week-long scout camp with his nightly g-tube feeds and nebs. I drove over every morning (once he went to class)to replenish the supplies. You do what you have to do. We believe having CF shouldn't take away their childhood.
 
 But, of course, you worry your head off while they're gone.<img src="i/expressions/face-icon-small-wink.gif" border="0">

Cherylwithone · May 4, 2008

Tina, I agreee with Jane. Malora does sleep overs. Most of them are always at her BFF house. One thing you must alway keep in mind. They are kids first. THey spend somemuch time in the hospital and being told you can't.....
But the bottom line is they need to have fun. Because when they get sick..They get really sick. I trust Malora's BFF mom with Malora's care. You set up a system. The first time your nervous and then when they come home and tell you what a great time they had, you take a deep breath and relax. You also have rules in place. If anyone at the sleepover house is sick they can't go. But, if they know the rules ahead of time it is no big deal. They will adjust.

Cheryl mom to Malora 15 w/cf

Cherylwithone · May 4, 2008

Tina, I agreee with Jane. Malora does sleep overs. Most of them are always at her BFF house. One thing you must alway keep in mind. They are kids first. THey spend somemuch time in the hospital and being told you can't.....
But the bottom line is they need to have fun. Because when they get sick..They get really sick. I trust Malora's BFF mom with Malora's care. You set up a system. The first time your nervous and then when they come home and tell you what a great time they had, you take a deep breath and relax. You also have rules in place. If anyone at the sleepover house is sick they can't go. But, if they know the rules ahead of time it is no big deal. They will adjust.

Cheryl mom to Malora 15 w/cf

Cherylwithone · May 4, 2008

Tina, I agreee with Jane. Malora does sleep overs. Most of them are always at her BFF house. One thing you must alway keep in mind. They are kids first. THey spend somemuch time in the hospital and being told you can't.....
But the bottom line is they need to have fun. Because when they get sick..They get really sick. I trust Malora's BFF mom with Malora's care. You set up a system. The first time your nervous and then when they come home and tell you what a great time they had, you take a deep breath and relax. You also have rules in place. If anyone at the sleepover house is sick they can't go. But, if they know the rules ahead of time it is no big deal. They will adjust.

Cheryl mom to Malora 15 w/cf

Cherylwithone · May 4, 2008

Tina, I agreee with Jane. Malora does sleep overs. Most of them are always at her BFF house. One thing you must alway keep in mind. They are kids first. THey spend somemuch time in the hospital and being told you can't.....
But the bottom line is they need to have fun. Because when they get sick..They get really sick. I trust Malora's BFF mom with Malora's care. You set up a system. The first time your nervous and then when they come home and tell you what a great time they had, you take a deep breath and relax. You also have rules in place. If anyone at the sleepover house is sick they can't go. But, if they know the rules ahead of time it is no big deal. They will adjust.

Cheryl mom to Malora 15 w/cf

Cherylwithone · May 4, 2008

Tina, I agreee with Jane. Malora does sleep overs. Most of them are always at her BFF house. One thing you must alway keep in mind. They are kids first. THey spend somemuch time in the hospital and being told you can't.....
 But the bottom line is they need to have fun. Because when they get sick..They get really sick. I trust Malora's BFF mom with Malora's care. You set up a system. The first time your nervous and then when they come home and tell you what a great time they had, you take a deep breath and relax. You also have rules in place. If anyone at the sleepover house is sick they can't go. But, if they know the rules ahead of time it is no big deal. They will adjust.
 
 Cheryl mom to Malora 15 w/cf

CJsmom · May 4, 2008