Frustrated!!

[Liza]

Hi Harriett,

It is frustrating when they finally gain weight and are doing so well in that department only to have it all gone in a matter of a couple of days. My girls have always had that problem. When they were little it was different for each of them. Anna would have the hardest time gaining her weight back. Mostly I think because she was older, high school, and was a very picky eater so school lunches were a challenge. Rachel didn't get sick too often and only lost about 2 lbs when she did and gained it back pretty quickly. This time around it's been hardest. College freshman, dorm food, and a picky eater. In Nov., down to about 85 from 98. She's managed to get back up to 94/95. Still at school though.

Since Emily seemed to gain so well once she finally got on enzymes, she might not have too much trouble regaining. Lots of butter, milk, and all the extra stuff I am sure you add already. You say she already takes carnation, add some extra powdered milk. Same when you make mashed potatoes. Here's something my aunt used to do (no CF so it probably wasn't a good thing) she'd add a couple of slices of American Cheese to her mashed potatoes along with the butter and milk. We couldn't really tell there was cheese in the mashed potatoes.

Just keep on with what you were doing before. I hope she's feeling better quick.

 

[Liza]

Hi Harriett,

It is frustrating when they finally gain weight and are doing so well in that department only to have it all gone in a matter of a couple of days. My girls have always had that problem. When they were little it was different for each of them. Anna would have the hardest time gaining her weight back. Mostly I think because she was older, high school, and was a very picky eater so school lunches were a challenge. Rachel didn't get sick too often and only lost about 2 lbs when she did and gained it back pretty quickly. This time around it's been hardest. College freshman, dorm food, and a picky eater. In Nov., down to about 85 from 98. She's managed to get back up to 94/95. Still at school though.

Since Emily seemed to gain so well once she finally got on enzymes, she might not have too much trouble regaining. Lots of butter, milk, and all the extra stuff I am sure you add already. You say she already takes carnation, add some extra powdered milk. Same when you make mashed potatoes. Here's something my aunt used to do (no CF so it probably wasn't a good thing) she'd add a couple of slices of American Cheese to her mashed potatoes along with the butter and milk. We couldn't really tell there was cheese in the mashed potatoes.

Just keep on with what you were doing before. I hope she's feeling better quick.

 

[Liza]

Hi Harriett,

It is frustrating when they finally gain weight and are doing so well in that department only to have it all gone in a matter of a couple of days. My girls have always had that problem. When they were little it was different for each of them. Anna would have the hardest time gaining her weight back. Mostly I think because she was older, high school, and was a very picky eater so school lunches were a challenge. Rachel didn't get sick too often and only lost about 2 lbs when she did and gained it back pretty quickly. This time around it's been hardest. College freshman, dorm food, and a picky eater. In Nov., down to about 85 from 98. She's managed to get back up to 94/95. Still at school though.

Since Emily seemed to gain so well once she finally got on enzymes, she might not have too much trouble regaining. Lots of butter, milk, and all the extra stuff I am sure you add already. You say she already takes carnation, add some extra powdered milk. Same when you make mashed potatoes. Here's something my aunt used to do (no CF so it probably wasn't a good thing) she'd add a couple of slices of American Cheese to her mashed potatoes along with the butter and milk. We couldn't really tell there was cheese in the mashed potatoes.

Just keep on with what you were doing before. I hope she's feeling better quick.

 

[Liza]

Hi Harriett,

It is frustrating when they finally gain weight and are doing so well in that department only to have it all gone in a matter of a couple of days. My girls have always had that problem. When they were little it was different for each of them. Anna would have the hardest time gaining her weight back. Mostly I think because she was older, high school, and was a very picky eater so school lunches were a challenge. Rachel didn't get sick too often and only lost about 2 lbs when she did and gained it back pretty quickly. This time around it's been hardest. College freshman, dorm food, and a picky eater. In Nov., down to about 85 from 98. She's managed to get back up to 94/95. Still at school though.

Since Emily seemed to gain so well once she finally got on enzymes, she might not have too much trouble regaining. Lots of butter, milk, and all the extra stuff I am sure you add already. You say she already takes carnation, add some extra powdered milk. Same when you make mashed potatoes. Here's something my aunt used to do (no CF so it probably wasn't a good thing) she'd add a couple of slices of American Cheese to her mashed potatoes along with the butter and milk. We couldn't really tell there was cheese in the mashed potatoes.

Just keep on with what you were doing before. I hope she's feeling better quick.

 

[Liza]

Hi Harriett,
<br />
<br />It is frustrating when they finally gain weight and are doing so well in that department only to have it all gone in a matter of a couple of days. My girls have always had that problem. When they were little it was different for each of them. Anna would have the hardest time gaining her weight back. Mostly I think because she was older, high school, and was a very picky eater so school lunches were a challenge. Rachel didn't get sick too often and only lost about 2 lbs when she did and gained it back pretty quickly. This time around it's been hardest. College freshman, dorm food, and a picky eater. In Nov., down to about 85 from 98. She's managed to get back up to 94/95. Still at school though.
<br />
<br />Since Emily seemed to gain so well once she finally got on enzymes, she might not have too much trouble regaining. Lots of butter, milk, and all the extra stuff I am sure you add already. You say she already takes carnation, add some extra powdered milk. Same when you make mashed potatoes. Here's something my aunt used to do (no CF so it probably wasn't a good thing) she'd add a couple of slices of American Cheese to her mashed potatoes along with the butter and milk. We couldn't really tell there was cheese in the mashed potatoes.
<br />
<br />Just keep on with what you were doing before. I hope she's feeling better quick.
<br />
<br />

 

[grassisgreener]

I used to get really sad when my daughter lost weight during a sickness, even just a pound would upset me. Over time, it has seemed that she has had no trouble gaining the weight right back, within a week or less sometimes so now I don't even weigh her when she is sick. I hope your daughter is feeling better soon and that you find that your daughter will gain her weight back quickly too!

 

[grassisgreener]

I used to get really sad when my daughter lost weight during a sickness, even just a pound would upset me. Over time, it has seemed that she has had no trouble gaining the weight right back, within a week or less sometimes so now I don't even weigh her when she is sick. I hope your daughter is feeling better soon and that you find that your daughter will gain her weight back quickly too!

 

[grassisgreener]

I used to get really sad when my daughter lost weight during a sickness, even just a pound would upset me. Over time, it has seemed that she has had no trouble gaining the weight right back, within a week or less sometimes so now I don't even weigh her when she is sick. I hope your daughter is feeling better soon and that you find that your daughter will gain her weight back quickly too!

 

[grassisgreener]

I used to get really sad when my daughter lost weight during a sickness, even just a pound would upset me. Over time, it has seemed that she has had no trouble gaining the weight right back, within a week or less sometimes so now I don't even weigh her when she is sick. I hope your daughter is feeling better soon and that you find that your daughter will gain her weight back quickly too!

 

[grassisgreener]

I used to get really sad when my daughter lost weight during a sickness, even just a pound would upset me. Over time, it has seemed that she has had no trouble gaining the weight right back, within a week or less sometimes so now I don't even weigh her when she is sick. I hope your daughter is feeling better soon and that you find that your daughter will gain her weight back quickly too!

 

[hmw]

Thank you so much Mel, Liza and grassisgreener. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I so much appreciate your replies. <img src="i/expressions/rose.gif" border="0">

I think part of my worry comes from the old pre-dx fear pounding in my brain, hoping that all this treatment is going to help her... we went through so much in trying to help her and *nothing* was working. Finally, we got an answer. And it was not an answer I ever expected, not an answer I *wanted*, but one I have finally started to make progress in accepting (I say made progress, because I don't think it's a cut and dry process when your child is dx'ed with an incurable disease), but I have been making progress, especially as I have seen her really start to become so much healthier as she is finally being treated appropriately.

Anyway, just a long winded way of saying, this is the first time we've seen her significantly ill since her dx, with more than a minor illness/infection, and it's really testing her treatment. Testing whether the doctors have really, finally, gotten things 'right' this time.

She is finally responding to the treatment, her cough is getting better on the Prednisone, but we can tell when it's wearing off... but she's continuing to ask for the Albuteral; she's getting 6 puffs of that every time she does her vest. We are seeing her cough up solid chunks of stuff only after starting the Prednisone. I am wondering now, is that due to the junk caused by the infection or is that due to the Prednisone opening things up enough for her to be able to cough more stuff out that has been in there all along?

Re. her weight: I hope we can come to relax about it and not feel like we have to weigh her often. Unfortunately we are in such a habit of doing it due to her hx! (And she loves to do it on our digital, lol, and will give me the 'report' on a regular basis, whether or not I ask for it. <img src="i/expressions/face-icon-small-tongue.gif" border="0"> ) It is good to know we are not alone with these concerns... hopefully she will continue to respond well to her enzymes and bounce back fast like kids typically do.

She loves mashed potatoes... lol; we ALL love them with cheese in them! We add extra butter to hers now though. I have seen nonfat dry milk in the past; I need to look for the whole milk kind and pick some up to try and add to other stuff. I add half & half to her Carnation (which I make with whole milk.) I know jusssst how much I can get away with before it hits the 'too creamy' point and she won't finish it.

It's such a fine balance we strive for when we try to 'supplement' their food without killing their appetite for the rest if their meal, you know?? I try to do the Carnation pre-vest and then breakfast after the vest, etc. Sometimes we can manage two small snacks and *then* a late supper (which dovetails well with the boys wanting some play time before homework before supper.) Man, sometimes it seems so much of our lives revolve around getting the food and the treatments into our kids...

 

[hmw]

Thank you so much Mel, Liza and grassisgreener. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I so much appreciate your replies. <img src="i/expressions/rose.gif" border="0">

I think part of my worry comes from the old pre-dx fear pounding in my brain, hoping that all this treatment is going to help her... we went through so much in trying to help her and *nothing* was working. Finally, we got an answer. And it was not an answer I ever expected, not an answer I *wanted*, but one I have finally started to make progress in accepting (I say made progress, because I don't think it's a cut and dry process when your child is dx'ed with an incurable disease), but I have been making progress, especially as I have seen her really start to become so much healthier as she is finally being treated appropriately.

Anyway, just a long winded way of saying, this is the first time we've seen her significantly ill since her dx, with more than a minor illness/infection, and it's really testing her treatment. Testing whether the doctors have really, finally, gotten things 'right' this time.

She is finally responding to the treatment, her cough is getting better on the Prednisone, but we can tell when it's wearing off... but she's continuing to ask for the Albuteral; she's getting 6 puffs of that every time she does her vest. We are seeing her cough up solid chunks of stuff only after starting the Prednisone. I am wondering now, is that due to the junk caused by the infection or is that due to the Prednisone opening things up enough for her to be able to cough more stuff out that has been in there all along?

Re. her weight: I hope we can come to relax about it and not feel like we have to weigh her often. Unfortunately we are in such a habit of doing it due to her hx! (And she loves to do it on our digital, lol, and will give me the 'report' on a regular basis, whether or not I ask for it. <img src="i/expressions/face-icon-small-tongue.gif" border="0"> ) It is good to know we are not alone with these concerns... hopefully she will continue to respond well to her enzymes and bounce back fast like kids typically do.

She loves mashed potatoes... lol; we ALL love them with cheese in them! We add extra butter to hers now though. I have seen nonfat dry milk in the past; I need to look for the whole milk kind and pick some up to try and add to other stuff. I add half & half to her Carnation (which I make with whole milk.) I know jusssst how much I can get away with before it hits the 'too creamy' point and she won't finish it.

It's such a fine balance we strive for when we try to 'supplement' their food without killing their appetite for the rest if their meal, you know?? I try to do the Carnation pre-vest and then breakfast after the vest, etc. Sometimes we can manage two small snacks and *then* a late supper (which dovetails well with the boys wanting some play time before homework before supper.) Man, sometimes it seems so much of our lives revolve around getting the food and the treatments into our kids...

 

[hmw]

Thank you so much Mel, Liza and grassisgreener. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I so much appreciate your replies. <img src="i/expressions/rose.gif" border="0">

I think part of my worry comes from the old pre-dx fear pounding in my brain, hoping that all this treatment is going to help her... we went through so much in trying to help her and *nothing* was working. Finally, we got an answer. And it was not an answer I ever expected, not an answer I *wanted*, but one I have finally started to make progress in accepting (I say made progress, because I don't think it's a cut and dry process when your child is dx'ed with an incurable disease), but I have been making progress, especially as I have seen her really start to become so much healthier as she is finally being treated appropriately.

Anyway, just a long winded way of saying, this is the first time we've seen her significantly ill since her dx, with more than a minor illness/infection, and it's really testing her treatment. Testing whether the doctors have really, finally, gotten things 'right' this time.

She is finally responding to the treatment, her cough is getting better on the Prednisone, but we can tell when it's wearing off... but she's continuing to ask for the Albuteral; she's getting 6 puffs of that every time she does her vest. We are seeing her cough up solid chunks of stuff only after starting the Prednisone. I am wondering now, is that due to the junk caused by the infection or is that due to the Prednisone opening things up enough for her to be able to cough more stuff out that has been in there all along?

Re. her weight: I hope we can come to relax about it and not feel like we have to weigh her often. Unfortunately we are in such a habit of doing it due to her hx! (And she loves to do it on our digital, lol, and will give me the 'report' on a regular basis, whether or not I ask for it. <img src="i/expressions/face-icon-small-tongue.gif" border="0"> ) It is good to know we are not alone with these concerns... hopefully she will continue to respond well to her enzymes and bounce back fast like kids typically do.

She loves mashed potatoes... lol; we ALL love them with cheese in them! We add extra butter to hers now though. I have seen nonfat dry milk in the past; I need to look for the whole milk kind and pick some up to try and add to other stuff. I add half & half to her Carnation (which I make with whole milk.) I know jusssst how much I can get away with before it hits the 'too creamy' point and she won't finish it.

It's such a fine balance we strive for when we try to 'supplement' their food without killing their appetite for the rest if their meal, you know?? I try to do the Carnation pre-vest and then breakfast after the vest, etc. Sometimes we can manage two small snacks and *then* a late supper (which dovetails well with the boys wanting some play time before homework before supper.) Man, sometimes it seems so much of our lives revolve around getting the food and the treatments into our kids...

 

[hmw]

Thank you so much Mel, Liza and grassisgreener. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I so much appreciate your replies. <img src="i/expressions/rose.gif" border="0">

I think part of my worry comes from the old pre-dx fear pounding in my brain, hoping that all this treatment is going to help her... we went through so much in trying to help her and *nothing* was working. Finally, we got an answer. And it was not an answer I ever expected, not an answer I *wanted*, but one I have finally started to make progress in accepting (I say made progress, because I don't think it's a cut and dry process when your child is dx'ed with an incurable disease), but I have been making progress, especially as I have seen her really start to become so much healthier as she is finally being treated appropriately.

Anyway, just a long winded way of saying, this is the first time we've seen her significantly ill since her dx, with more than a minor illness/infection, and it's really testing her treatment. Testing whether the doctors have really, finally, gotten things 'right' this time.

She is finally responding to the treatment, her cough is getting better on the Prednisone, but we can tell when it's wearing off... but she's continuing to ask for the Albuteral; she's getting 6 puffs of that every time she does her vest. We are seeing her cough up solid chunks of stuff only after starting the Prednisone. I am wondering now, is that due to the junk caused by the infection or is that due to the Prednisone opening things up enough for her to be able to cough more stuff out that has been in there all along?

Re. her weight: I hope we can come to relax about it and not feel like we have to weigh her often. Unfortunately we are in such a habit of doing it due to her hx! (And she loves to do it on our digital, lol, and will give me the 'report' on a regular basis, whether or not I ask for it. <img src="i/expressions/face-icon-small-tongue.gif" border="0"> ) It is good to know we are not alone with these concerns... hopefully she will continue to respond well to her enzymes and bounce back fast like kids typically do.

She loves mashed potatoes... lol; we ALL love them with cheese in them! We add extra butter to hers now though. I have seen nonfat dry milk in the past; I need to look for the whole milk kind and pick some up to try and add to other stuff. I add half & half to her Carnation (which I make with whole milk.) I know jusssst how much I can get away with before it hits the 'too creamy' point and she won't finish it.

It's such a fine balance we strive for when we try to 'supplement' their food without killing their appetite for the rest if their meal, you know?? I try to do the Carnation pre-vest and then breakfast after the vest, etc. Sometimes we can manage two small snacks and *then* a late supper (which dovetails well with the boys wanting some play time before homework before supper.) Man, sometimes it seems so much of our lives revolve around getting the food and the treatments into our kids...

 

[hmw]

Thank you so much Mel, Liza and grassisgreener. <img src="i/expressions/face-icon-small-smile.gif" border="0"> I so much appreciate your replies. <img src="i/expressions/rose.gif" border="0">
<br />
<br />I think part of my worry comes from the old pre-dx fear pounding in my brain, hoping that all this treatment is going to help her... we went through so much in trying to help her and *nothing* was working. Finally, we got an answer. And it was not an answer I ever expected, not an answer I *wanted*, but one I have finally started to make progress in accepting (I say made progress, because I don't think it's a cut and dry process when your child is dx'ed with an incurable disease), but I have been making progress, especially as I have seen her really start to become so much healthier as she is finally being treated appropriately.
<br />
<br />Anyway, just a long winded way of saying, this is the first time we've seen her significantly ill since her dx, with more than a minor illness/infection, and it's really testing her treatment. Testing whether the doctors have really, finally, gotten things 'right' this time.
<br />
<br />She is finally responding to the treatment, her cough is getting better on the Prednisone, but we can tell when it's wearing off... but she's continuing to ask for the Albuteral; she's getting 6 puffs of that every time she does her vest. We are seeing her cough up solid chunks of stuff only after starting the Prednisone. I am wondering now, is that due to the junk caused by the infection or is that due to the Prednisone opening things up enough for her to be able to cough more stuff out that has been in there all along?
<br />
<br />Re. her weight: I hope we can come to relax about it and not feel like we have to weigh her often. Unfortunately we are in such a habit of doing it due to her hx! (And she loves to do it on our digital, lol, and will give me the 'report' on a regular basis, whether or not I ask for it. <img src="i/expressions/face-icon-small-tongue.gif" border="0"> ) It is good to know we are not alone with these concerns... hopefully she will continue to respond well to her enzymes and bounce back fast like kids typically do.
<br />
<br />She loves mashed potatoes... lol; we ALL love them with cheese in them! We add extra butter to hers now though. I have seen nonfat dry milk in the past; I need to look for the whole milk kind and pick some up to try and add to other stuff. I add half & half to her Carnation (which I make with whole milk.) I know jusssst how much I can get away with before it hits the 'too creamy' point and she won't finish it.
<br />
<br />It's such a fine balance we strive for when we try to 'supplement' their food without killing their appetite for the rest if their meal, you know?? I try to do the Carnation pre-vest and then breakfast after the vest, etc. Sometimes we can manage two small snacks and *then* a late supper (which dovetails well with the boys wanting some play time before homework before supper.) Man, sometimes it seems so much of our lives revolve around getting the food and the treatments into our kids...
<br />
<br />

 

[asiewny]

Wow, Harriett, I really know what you mean about the weight loss after all the that you have gone through with the diagnosis process. I am thinking of you and Emily and hope she recovers quickly and is able to gain her weight back more quickly than before her diagnosis. It seems that we are "obsessed" with our son's weight also. We weigh him frequently and celebrate when he has gained even an ounce or just maintained, but when he gets sick, he loses and takes forever to gain it back. He weighed 52 lbs. (he is 10) in October, got sick a couple of times in the winter and lost and now he is tetering back onto 51-52lbs. Whenever I see him and he looks sick, (he has been getting flushed in the face a lot lately)I immediately weigh him and keep a close eye on his weight. He eats like a horse though-yesterday, I took him out to eat and he ate almost an entire appetizer of chicken wings, a whole order of pasta and sauce, rice, and a chicken fajita!
We are still awaiting the results of the amplified genetic test and we go back to CF clinic in two weeks. I keep trying to tell myself "no news is good news" but we were mailed the results of the first genetic test that was negative, but have not recieved anything for the amplified test and it has been almost two months since he had the test. I am too afraid to call so I will wait for the appt. I figure it will be hopefull either way, because he will either not have CF and we will begin growth hormone, or he will have CF, but will have more appropriate treatement. Either way he will start to grow with treatment and feel better.
I hope Emily feels better soon, take care of yourself too!
Alison

 

[asiewny]

Wow, Harriett, I really know what you mean about the weight loss after all the that you have gone through with the diagnosis process. I am thinking of you and Emily and hope she recovers quickly and is able to gain her weight back more quickly than before her diagnosis. It seems that we are "obsessed" with our son's weight also. We weigh him frequently and celebrate when he has gained even an ounce or just maintained, but when he gets sick, he loses and takes forever to gain it back. He weighed 52 lbs. (he is 10) in October, got sick a couple of times in the winter and lost and now he is tetering back onto 51-52lbs. Whenever I see him and he looks sick, (he has been getting flushed in the face a lot lately)I immediately weigh him and keep a close eye on his weight. He eats like a horse though-yesterday, I took him out to eat and he ate almost an entire appetizer of chicken wings, a whole order of pasta and sauce, rice, and a chicken fajita!
We are still awaiting the results of the amplified genetic test and we go back to CF clinic in two weeks. I keep trying to tell myself "no news is good news" but we were mailed the results of the first genetic test that was negative, but have not recieved anything for the amplified test and it has been almost two months since he had the test. I am too afraid to call so I will wait for the appt. I figure it will be hopefull either way, because he will either not have CF and we will begin growth hormone, or he will have CF, but will have more appropriate treatement. Either way he will start to grow with treatment and feel better.
I hope Emily feels better soon, take care of yourself too!
Alison

 

[asiewny]

Wow, Harriett, I really know what you mean about the weight loss after all the that you have gone through with the diagnosis process. I am thinking of you and Emily and hope she recovers quickly and is able to gain her weight back more quickly than before her diagnosis. It seems that we are "obsessed" with our son's weight also. We weigh him frequently and celebrate when he has gained even an ounce or just maintained, but when he gets sick, he loses and takes forever to gain it back. He weighed 52 lbs. (he is 10) in October, got sick a couple of times in the winter and lost and now he is tetering back onto 51-52lbs. Whenever I see him and he looks sick, (he has been getting flushed in the face a lot lately)I immediately weigh him and keep a close eye on his weight. He eats like a horse though-yesterday, I took him out to eat and he ate almost an entire appetizer of chicken wings, a whole order of pasta and sauce, rice, and a chicken fajita!
We are still awaiting the results of the amplified genetic test and we go back to CF clinic in two weeks. I keep trying to tell myself "no news is good news" but we were mailed the results of the first genetic test that was negative, but have not recieved anything for the amplified test and it has been almost two months since he had the test. I am too afraid to call so I will wait for the appt. I figure it will be hopefull either way, because he will either not have CF and we will begin growth hormone, or he will have CF, but will have more appropriate treatement. Either way he will start to grow with treatment and feel better.
I hope Emily feels better soon, take care of yourself too!
Alison

 

[asiewny]

Wow, Harriett, I really know what you mean about the weight loss after all the that you have gone through with the diagnosis process. I am thinking of you and Emily and hope she recovers quickly and is able to gain her weight back more quickly than before her diagnosis. It seems that we are "obsessed" with our son's weight also. We weigh him frequently and celebrate when he has gained even an ounce or just maintained, but when he gets sick, he loses and takes forever to gain it back. He weighed 52 lbs. (he is 10) in October, got sick a couple of times in the winter and lost and now he is tetering back onto 51-52lbs. Whenever I see him and he looks sick, (he has been getting flushed in the face a lot lately)I immediately weigh him and keep a close eye on his weight. He eats like a horse though-yesterday, I took him out to eat and he ate almost an entire appetizer of chicken wings, a whole order of pasta and sauce, rice, and a chicken fajita!
We are still awaiting the results of the amplified genetic test and we go back to CF clinic in two weeks. I keep trying to tell myself "no news is good news" but we were mailed the results of the first genetic test that was negative, but have not recieved anything for the amplified test and it has been almost two months since he had the test. I am too afraid to call so I will wait for the appt. I figure it will be hopefull either way, because he will either not have CF and we will begin growth hormone, or he will have CF, but will have more appropriate treatement. Either way he will start to grow with treatment and feel better.
I hope Emily feels better soon, take care of yourself too!
Alison

 

[asiewny]

Wow, Harriett, I really know what you mean about the weight loss after all the that you have gone through with the diagnosis process. I am thinking of you and Emily and hope she recovers quickly and is able to gain her weight back more quickly than before her diagnosis. It seems that we are "obsessed" with our son's weight also. We weigh him frequently and celebrate when he has gained even an ounce or just maintained, but when he gets sick, he loses and takes forever to gain it back. He weighed 52 lbs. (he is 10) in October, got sick a couple of times in the winter and lost and now he is tetering back onto 51-52lbs. Whenever I see him and he looks sick, (he has been getting flushed in the face a lot lately)I immediately weigh him and keep a close eye on his weight. He eats like a horse though-yesterday, I took him out to eat and he ate almost an entire appetizer of chicken wings, a whole order of pasta and sauce, rice, and a chicken fajita!
<br />We are still awaiting the results of the amplified genetic test and we go back to CF clinic in two weeks. I keep trying to tell myself "no news is good news" but we were mailed the results of the first genetic test that was negative, but have not recieved anything for the amplified test and it has been almost two months since he had the test. I am too afraid to call so I will wait for the appt. I figure it will be hopefull either way, because he will either not have CF and we will begin growth hormone, or he will have CF, but will have more appropriate treatement. Either way he will start to grow with treatment and feel better.
<br />I hope Emily feels better soon, take care of yourself too!
<br />Alison