How do you help them cope?

[Mommafirst]

Alyssa had clinic today. Her lungs sound great, she's doing awesome. A wonderful visit...mostly. She was doing so awesome with her weight on the last few visits that they had given us permission to start dropping some of the tube feeds. Last visit 2 months ago we were down to 4 days a week. We went down to 3 nights a week and she was holding steady, looking almost plump, very healthy. So last week we dropped all the feeds, decided to see how she'd do with weaning completely.

Today she was down about half a pound but had grown several cm, so her BMI plunged over 30 percentage points. So, as expected, CF team wants her back on the feeding tube at least 4 days/week. I'm disappointed, but oh well, at least its an easy fix at this point.

But Alyssa is flipping out. She's been moaning all over the house since we got home repeatedly telling me that she doesn't want to do her tube feeds again. I think, she is upset because she likes to sleep in her brothers' room and we only have let her do that on the nights where she doesn't get feeds. I'm sure we can work it out so that she can sleep in there AND get the feed, but she isn't hearing any of it. I've tried to explain 8 times already this afternoon why the doctor wants us to go back to the tube feeds and how it stinks but we'll make it work, because its going to make her big and strong. But she just continues to whine that I'm not listening and she doesn't want to do it. I've asked her if I should lie to her and tell her that we won't have to do it, and she said yes!! : )

(as I've typed this she has interrupted 4 times to tell me "I'm really not kiddin', I don't want to do my feeding tube again." )

CF sucks. Beyond the physical, there is the emotional. The let downs, the being different, the loss of so much. I try so hard to help her live as normal a life as she can. But somethings are just not negotiable. So how do we help them cope with these things and the emotions surrounding them???

 

[Mommafirst]

Alyssa had clinic today. Her lungs sound great, she's doing awesome. A wonderful visit...mostly. She was doing so awesome with her weight on the last few visits that they had given us permission to start dropping some of the tube feeds. Last visit 2 months ago we were down to 4 days a week. We went down to 3 nights a week and she was holding steady, looking almost plump, very healthy. So last week we dropped all the feeds, decided to see how she'd do with weaning completely.

Today she was down about half a pound but had grown several cm, so her BMI plunged over 30 percentage points. So, as expected, CF team wants her back on the feeding tube at least 4 days/week. I'm disappointed, but oh well, at least its an easy fix at this point.

But Alyssa is flipping out. She's been moaning all over the house since we got home repeatedly telling me that she doesn't want to do her tube feeds again. I think, she is upset because she likes to sleep in her brothers' room and we only have let her do that on the nights where she doesn't get feeds. I'm sure we can work it out so that she can sleep in there AND get the feed, but she isn't hearing any of it. I've tried to explain 8 times already this afternoon why the doctor wants us to go back to the tube feeds and how it stinks but we'll make it work, because its going to make her big and strong. But she just continues to whine that I'm not listening and she doesn't want to do it. I've asked her if I should lie to her and tell her that we won't have to do it, and she said yes!! : )

(as I've typed this she has interrupted 4 times to tell me "I'm really not kiddin', I don't want to do my feeding tube again." )

CF sucks. Beyond the physical, there is the emotional. The let downs, the being different, the loss of so much. I try so hard to help her live as normal a life as she can. But somethings are just not negotiable. So how do we help them cope with these things and the emotions surrounding them???

 

[Mommafirst]

Alyssa had clinic today. Her lungs sound great, she's doing awesome. A wonderful visit...mostly. She was doing so awesome with her weight on the last few visits that they had given us permission to start dropping some of the tube feeds. Last visit 2 months ago we were down to 4 days a week. We went down to 3 nights a week and she was holding steady, looking almost plump, very healthy. So last week we dropped all the feeds, decided to see how she'd do with weaning completely.
<br />
<br />Today she was down about half a pound but had grown several cm, so her BMI plunged over 30 percentage points. So, as expected, CF team wants her back on the feeding tube at least 4 days/week. I'm disappointed, but oh well, at least its an easy fix at this point.
<br />
<br />But Alyssa is flipping out. She's been moaning all over the house since we got home repeatedly telling me that she doesn't want to do her tube feeds again. I think, she is upset because she likes to sleep in her brothers' room and we only have let her do that on the nights where she doesn't get feeds. I'm sure we can work it out so that she can sleep in there AND get the feed, but she isn't hearing any of it. I've tried to explain 8 times already this afternoon why the doctor wants us to go back to the tube feeds and how it stinks but we'll make it work, because its going to make her big and strong. But she just continues to whine that I'm not listening and she doesn't want to do it. I've asked her if I should lie to her and tell her that we won't have to do it, and she said yes!! : )
<br />
<br />(as I've typed this she has interrupted 4 times to tell me "I'm really not kiddin', I don't want to do my feeding tube again." )
<br />
<br />CF sucks. Beyond the physical, there is the emotional. The let downs, the being different, the loss of so much. I try so hard to help her live as normal a life as she can. But somethings are just not negotiable. So how do we help them cope with these things and the emotions surrounding them???

 

[grantsmom]

Heather,

I know that weight issues can be so frustrating. Every ounce gained is such an accomplishment. Clinic visits can be so emotionally exhausting especially the not so good appointments. I wish I had some advice for you but since Grant is only one year we havn't had to deal with that yet.

I don't know if you are aware but we go to the same clinic. I was there today too. I was at Cf education day but had to leave early. Hopefully someday we will meet. Please keep us posted. Take Care

 

[grantsmom]

Heather,

I know that weight issues can be so frustrating. Every ounce gained is such an accomplishment. Clinic visits can be so emotionally exhausting especially the not so good appointments. I wish I had some advice for you but since Grant is only one year we havn't had to deal with that yet.

I don't know if you are aware but we go to the same clinic. I was there today too. I was at Cf education day but had to leave early. Hopefully someday we will meet. Please keep us posted. Take Care

 

[grantsmom]

Heather,
<br />
<br />I know that weight issues can be so frustrating. Every ounce gained is such an accomplishment. Clinic visits can be so emotionally exhausting especially the not so good appointments. I wish I had some advice for you but since Grant is only one year we havn't had to deal with that yet.
<br />
<br />I don't know if you are aware but we go to the same clinic. I was there today too. I was at Cf education day but had to leave early. Hopefully someday we will meet. Please keep us posted. Take Care
<br />

 

[Mommafirst]

Thanks Missy. I didn't know we went to the same clinic. I'm PMing you now.

 

[Mommafirst]

Thanks Missy. I didn't know we went to the same clinic. I'm PMing you now.

 

[Mommafirst]

Thanks Missy. I didn't know we went to the same clinic. I'm PMing you now.

 

[LouLou]

Hugs Heather. No advice really but I wanted to commiserate that yes CF sucks. One thought is that consistency will help. But I'm not sure how wheening keys into this. Like anything else in life we get used to doing the things we don't like doing if it becomes habitual.

I often wonder how much healthier I would be if my cf doctor I saw when I was a teen would have been stern about pt. She let me exchange exercise for pt. This got me out of the pt habit and it wasn't until I totally 'gave in' and made a habit and pact (sp?) with myself that I was going to do all my treatments was I 100% compliant. Until that day I evaulated myself and asked the question each and everytime. Do I need to do this today? Once I stopped asking and just started doing things were much easier. Totally different scenerio but perhaps it helps?

 

[LouLou]

Hugs Heather. No advice really but I wanted to commiserate that yes CF sucks. One thought is that consistency will help. But I'm not sure how wheening keys into this. Like anything else in life we get used to doing the things we don't like doing if it becomes habitual.

I often wonder how much healthier I would be if my cf doctor I saw when I was a teen would have been stern about pt. She let me exchange exercise for pt. This got me out of the pt habit and it wasn't until I totally 'gave in' and made a habit and pact (sp?) with myself that I was going to do all my treatments was I 100% compliant. Until that day I evaulated myself and asked the question each and everytime. Do I need to do this today? Once I stopped asking and just started doing things were much easier. Totally different scenerio but perhaps it helps?

 

[LouLou]

Hugs Heather. No advice really but I wanted to commiserate that yes CF sucks. One thought is that consistency will help. But I'm not sure how wheening keys into this. Like anything else in life we get used to doing the things we don't like doing if it becomes habitual.
<br />
<br />I often wonder how much healthier I would be if my cf doctor I saw when I was a teen would have been stern about pt. She let me exchange exercise for pt. This got me out of the pt habit and it wasn't until I totally 'gave in' and made a habit and pact (sp?) with myself that I was going to do all my treatments was I 100% compliant. Until that day I evaulated myself and asked the question each and everytime. Do I need to do this today? Once I stopped asking and just started doing things were much easier. Totally different scenerio but perhaps it helps?

 

[ktsmom]

I'm really sorry Heather. We deal with this on a much much smaller scale every time we come off our TOBI vacation. Whining, counting how many nebs we have to do now, etc. Obviously I shouldn't make such a big deal of how great it is to be free of TOBI in the off months.

So on the weight thing, she is obviously growing taller (yippee!) and I HATE that we can't just celebrate that. Katy has been adding a lot of height very quickly, and it just sucks that I anxiously watch to see if the weight is gaining proportionately.

I admire how your are responding to Alyssa (and chuckle a little at her insistence that you are not listening). It sounds like you have reached a good compromise and I hope she comes around soon. You and she WILL "make it work". You are a good mom!

 

[ktsmom]

I'm really sorry Heather. We deal with this on a much much smaller scale every time we come off our TOBI vacation. Whining, counting how many nebs we have to do now, etc. Obviously I shouldn't make such a big deal of how great it is to be free of TOBI in the off months.

So on the weight thing, she is obviously growing taller (yippee!) and I HATE that we can't just celebrate that. Katy has been adding a lot of height very quickly, and it just sucks that I anxiously watch to see if the weight is gaining proportionately.

I admire how your are responding to Alyssa (and chuckle a little at her insistence that you are not listening). It sounds like you have reached a good compromise and I hope she comes around soon. You and she WILL "make it work". You are a good mom!

 

[ktsmom]

I'm really sorry Heather. We deal with this on a much much smaller scale every time we come off our TOBI vacation. Whining, counting how many nebs we have to do now, etc. Obviously I shouldn't make such a big deal of how great it is to be free of TOBI in the off months.
<br />
<br />So on the weight thing, she is obviously growing taller (yippee!) and I HATE that we can't just celebrate that. Katy has been adding a lot of height very quickly, and it just sucks that I anxiously watch to see if the weight is gaining proportionately.
<br />
<br />I admire how your are responding to Alyssa (and chuckle a little at her insistence that you are not listening). It sounds like you have reached a good compromise and I hope she comes around soon. You and she WILL "make it work". You are a good mom!

 

[Rebjane]

It does suck. A couple things first; what struck me is Alyssa is one strong feisty child; which as I am sure you know will only benefit her in CF. She's only 4? Certainly sounds like she has a mind of her own.

I have found rewards work in these situations..A toy she really wants; or movie or whatever is in and really special. If she can work with you and do her feeds she will get the Zhu Zhu pet or special video game; whatever.

A couple weeks ago, Maggie was having a "why Me" moment. Doing her VEST, her voice shaking saying Why ME??? WHy do I have CF Why can't Sammy have it ? and I don't it's not fair...Ugh; I said Life doesn't work that way. It isn't fair, it does suck. Sucks at 7 they need to learn that life isn't fair. I think the lesson to teach is everyone has their own difficultys to bear in life. THis is a big one; BUT to make the most of life; figure a way not to dwell on it. And yes, I do think when they are this little it is something they can understand.

You are an awesome mom; I hate that as moms we have to do things to are kids that is uncomfortable. I feel like everyone (meaning my children) will resent me when they are grown... We just do the best we can... I know you are.

Rebecca

 

[Rebjane]

It does suck. A couple things first; what struck me is Alyssa is one strong feisty child; which as I am sure you know will only benefit her in CF. She's only 4? Certainly sounds like she has a mind of her own.

I have found rewards work in these situations..A toy she really wants; or movie or whatever is in and really special. If she can work with you and do her feeds she will get the Zhu Zhu pet or special video game; whatever.

A couple weeks ago, Maggie was having a "why Me" moment. Doing her VEST, her voice shaking saying Why ME??? WHy do I have CF Why can't Sammy have it ? and I don't it's not fair...Ugh; I said Life doesn't work that way. It isn't fair, it does suck. Sucks at 7 they need to learn that life isn't fair. I think the lesson to teach is everyone has their own difficultys to bear in life. THis is a big one; BUT to make the most of life; figure a way not to dwell on it. And yes, I do think when they are this little it is something they can understand.

You are an awesome mom; I hate that as moms we have to do things to are kids that is uncomfortable. I feel like everyone (meaning my children) will resent me when they are grown... We just do the best we can... I know you are.

Rebecca

 

[Rebjane]

It does suck. A couple things first; what struck me is Alyssa is one strong feisty child; which as I am sure you know will only benefit her in CF. She's only 4? Certainly sounds like she has a mind of her own.
<br />
<br />I have found rewards work in these situations..A toy she really wants; or movie or whatever is in and really special. If she can work with you and do her feeds she will get the Zhu Zhu pet or special video game; whatever.
<br />
<br />A couple weeks ago, Maggie was having a "why Me" moment. Doing her VEST, her voice shaking saying Why ME??? WHy do I have CF Why can't Sammy have it ? and I don't it's not fair...Ugh; I said Life doesn't work that way. It isn't fair, it does suck. Sucks at 7 they need to learn that life isn't fair. I think the lesson to teach is everyone has their own difficultys to bear in life. THis is a big one; BUT to make the most of life; figure a way not to dwell on it. And yes, I do think when they are this little it is something they can understand.
<br />
<br />You are an awesome mom; I hate that as moms we have to do things to are kids that is uncomfortable. I feel like everyone (meaning my children) will resent me when they are grown... We just do the best we can... I know you are.
<br />
<br />Rebecca

 

[westonsmom]

I second the notion that CF SUCKS!!! I have no advice except that just be sympathetic and try to explain why in ways that are age appropriate. She's still going to complain and I think we need to let them complain and protest even though it tears out our own hearts! I find it hard to separate my own feelings in times like these. I just hate when my child has to suffer and I also hate some of these things for myself to be perfectly honest. It is a lot (on you and her). (((Hugs)))). I also feel the same way as Katie's mom. It sucks that we can't celebrate height because weight doesn't always come with it. I am having this same battle with Weston. He has grown so much and many people comment on how tall he got, but they also comment on how his butt crack shows all the time and I know that it is because he has lost the width. Hang in there.

 

[westonsmom]

I second the notion that CF SUCKS!!! I have no advice except that just be sympathetic and try to explain why in ways that are age appropriate. She's still going to complain and I think we need to let them complain and protest even though it tears out our own hearts! I find it hard to separate my own feelings in times like these. I just hate when my child has to suffer and I also hate some of these things for myself to be perfectly honest. It is a lot (on you and her). (((Hugs)))). I also feel the same way as Katie's mom. It sucks that we can't celebrate height because weight doesn't always come with it. I am having this same battle with Weston. He has grown so much and many people comment on how tall he got, but they also comment on how his butt crack shows all the time and I know that it is because he has lost the width. Hang in there.