What have you learned?

barbc888 · Jul 4, 2007

This site has taught me (actually reminds me everyday) that I'm not in this fight alone.

That there are so many great people on this site, far and away, or closer than I think, who just want to be supported and to support others, to share our experiences.

This was the first place I learned about hypertonic saline. And when I mentioned to my dr. 3 mos. ago that I wanted to try it, he was all for it because my PFT's were not improving, even after home I.V.'s. Wouldn't you know, I went to the doctor 2 days ago, and my PFT's went from 42% to 46%. I swear it's because of the hypertonic saline! And I would have never known about it had I not come to this site.

Happy 4th everyone!

Barbara
40 w/CF & CFRD

barbc888 · Jul 4, 2007

This site has taught me (actually reminds me everyday) that I'm not in this fight alone.

That there are so many great people on this site, far and away, or closer than I think, who just want to be supported and to support others, to share our experiences.

This was the first place I learned about hypertonic saline. And when I mentioned to my dr. 3 mos. ago that I wanted to try it, he was all for it because my PFT's were not improving, even after home I.V.'s. Wouldn't you know, I went to the doctor 2 days ago, and my PFT's went from 42% to 46%. I swear it's because of the hypertonic saline! And I would have never known about it had I not come to this site.

Happy 4th everyone!

Barbara
40 w/CF & CFRD

izemmom · Jul 4, 2007

Wow! What have I learned? Where do I start? I think I have been on this site almost every day since Emily was dx...20 months ago. A friend who works at Children's Hospital and works with kids with eating disorders told me to check it out on the second day we were in the NICU. I still have no idea how he knew about this site. But, I am grateful.

What have I learned?
1. Let Emily be a kid. Many, many of the adult cf'ers here have said that over and over. She needs to LIVE. Daily, I fight my urge to "over-protect." I firmly beleive though, that she needs to be a normal, as Heather said.

2. What pseudomonas is and how it is treated. Our pulmononogist could not beleive it when I asked about psuedomonas at our first consult with her (Em was 7 days old). I had read about it here, and drawn the conclusion that we would probably not avoid it..so I asked the pulmo how aggressive she was willing to be in fighting it. A month later when Em cultured it, I got my answer. She is now PA free, for a year and counting.

3. Just being here and picking up the "lingo" has helped me immenslely. I go into each clinic visit with a list of questions I generated from being here. I think it helps me to make sure Em is getting the best possible care.

4. That I'm not alone. That other cf moms and dads feel like I do and have bad days. That there is always hope and that we have nothing if we don't have hope. That I need to make sure that my non-cf kid gets good care, too. That life will one day be normal.

5. The importance of good nutrition. I am always coming here and going through old threads to look for ideas for weight gain. I have also learned that we'll be ok if Em does get her g-tube in a few months (although I'm still going to fight like mad to help her gain so she doesn't need it....)

There are soooo many other things I could list. Generally, I think its safe to say that I learned 90% of what I know about cf from this site. I honestly don't know where I'd be without it.

izemmom · Jul 4, 2007

Wow! What have I learned? Where do I start? I think I have been on this site almost every day since Emily was dx...20 months ago. A friend who works at Children's Hospital and works with kids with eating disorders told me to check it out on the second day we were in the NICU. I still have no idea how he knew about this site. But, I am grateful.

What have I learned?
1. Let Emily be a kid. Many, many of the adult cf'ers here have said that over and over. She needs to LIVE. Daily, I fight my urge to "over-protect." I firmly beleive though, that she needs to be a normal, as Heather said.

2. What pseudomonas is and how it is treated. Our pulmononogist could not beleive it when I asked about psuedomonas at our first consult with her (Em was 7 days old). I had read about it here, and drawn the conclusion that we would probably not avoid it..so I asked the pulmo how aggressive she was willing to be in fighting it. A month later when Em cultured it, I got my answer. She is now PA free, for a year and counting.

3. Just being here and picking up the "lingo" has helped me immenslely. I go into each clinic visit with a list of questions I generated from being here. I think it helps me to make sure Em is getting the best possible care.

4. That I'm not alone. That other cf moms and dads feel like I do and have bad days. That there is always hope and that we have nothing if we don't have hope. That I need to make sure that my non-cf kid gets good care, too. That life will one day be normal.

5. The importance of good nutrition. I am always coming here and going through old threads to look for ideas for weight gain. I have also learned that we'll be ok if Em does get her g-tube in a few months (although I'm still going to fight like mad to help her gain so she doesn't need it....)

There are soooo many other things I could list. Generally, I think its safe to say that I learned 90% of what I know about cf from this site. I honestly don't know where I'd be without it.

izemmom · Jul 4, 2007

Wow! What have I learned? Where do I start? I think I have been on this site almost every day since Emily was dx...20 months ago. A friend who works at Children's Hospital and works with kids with eating disorders told me to check it out on the second day we were in the NICU. I still have no idea how he knew about this site. But, I am grateful.

What have I learned?
1. Let Emily be a kid. Many, many of the adult cf'ers here have said that over and over. She needs to LIVE. Daily, I fight my urge to "over-protect." I firmly beleive though, that she needs to be a normal, as Heather said.

2. What pseudomonas is and how it is treated. Our pulmononogist could not beleive it when I asked about psuedomonas at our first consult with her (Em was 7 days old). I had read about it here, and drawn the conclusion that we would probably not avoid it..so I asked the pulmo how aggressive she was willing to be in fighting it. A month later when Em cultured it, I got my answer. She is now PA free, for a year and counting.

3. Just being here and picking up the "lingo" has helped me immenslely. I go into each clinic visit with a list of questions I generated from being here. I think it helps me to make sure Em is getting the best possible care.

4. That I'm not alone. That other cf moms and dads feel like I do and have bad days. That there is always hope and that we have nothing if we don't have hope. That I need to make sure that my non-cf kid gets good care, too. That life will one day be normal.

5. The importance of good nutrition. I am always coming here and going through old threads to look for ideas for weight gain. I have also learned that we'll be ok if Em does get her g-tube in a few months (although I'm still going to fight like mad to help her gain so she doesn't need it....)

There are soooo many other things I could list. Generally, I think its safe to say that I learned 90% of what I know about cf from this site. I honestly don't know where I'd be without it.

izemmom · Jul 4, 2007

Wow! What have I learned? Where do I start? I think I have been on this site almost every day since Emily was dx...20 months ago. A friend who works at Children's Hospital and works with kids with eating disorders told me to check it out on the second day we were in the NICU. I still have no idea how he knew about this site. But, I am grateful.

What have I learned?
1. Let Emily be a kid. Many, many of the adult cf'ers here have said that over and over. She needs to LIVE. Daily, I fight my urge to "over-protect." I firmly beleive though, that she needs to be a normal, as Heather said.

2. What pseudomonas is and how it is treated. Our pulmononogist could not beleive it when I asked about psuedomonas at our first consult with her (Em was 7 days old). I had read about it here, and drawn the conclusion that we would probably not avoid it..so I asked the pulmo how aggressive she was willing to be in fighting it. A month later when Em cultured it, I got my answer. She is now PA free, for a year and counting.

3. Just being here and picking up the "lingo" has helped me immenslely. I go into each clinic visit with a list of questions I generated from being here. I think it helps me to make sure Em is getting the best possible care.

4. That I'm not alone. That other cf moms and dads feel like I do and have bad days. That there is always hope and that we have nothing if we don't have hope. That I need to make sure that my non-cf kid gets good care, too. That life will one day be normal.

5. The importance of good nutrition. I am always coming here and going through old threads to look for ideas for weight gain. I have also learned that we'll be ok if Em does get her g-tube in a few months (although I'm still going to fight like mad to help her gain so she doesn't need it....)

There are soooo many other things I could list. Generally, I think its safe to say that I learned 90% of what I know about cf from this site. I honestly don't know where I'd be without it.

izemmom · Jul 4, 2007

Wow! What have I learned? Where do I start? I think I have been on this site almost every day since Emily was dx...20 months ago. A friend who works at Children's Hospital and works with kids with eating disorders told me to check it out on the second day we were in the NICU. I still have no idea how he knew about this site. But, I am grateful.

What have I learned?
1. Let Emily be a kid. Many, many of the adult cf'ers here have said that over and over. She needs to LIVE. Daily, I fight my urge to "over-protect." I firmly beleive though, that she needs to be a normal, as Heather said.

2. What pseudomonas is and how it is treated. Our pulmononogist could not beleive it when I asked about psuedomonas at our first consult with her (Em was 7 days old). I had read about it here, and drawn the conclusion that we would probably not avoid it..so I asked the pulmo how aggressive she was willing to be in fighting it. A month later when Em cultured it, I got my answer. She is now PA free, for a year and counting.

3. Just being here and picking up the "lingo" has helped me immenslely. I go into each clinic visit with a list of questions I generated from being here. I think it helps me to make sure Em is getting the best possible care.

4. That I'm not alone. That other cf moms and dads feel like I do and have bad days. That there is always hope and that we have nothing if we don't have hope. That I need to make sure that my non-cf kid gets good care, too. That life will one day be normal.

5. The importance of good nutrition. I am always coming here and going through old threads to look for ideas for weight gain. I have also learned that we'll be ok if Em does get her g-tube in a few months (although I'm still going to fight like mad to help her gain so she doesn't need it....)

There are soooo many other things I could list. Generally, I think its safe to say that I learned 90% of what I know about cf from this site. I honestly don't know where I'd be without it.

izemmom · Jul 4, 2007

Wow! What have I learned? Where do I start? I think I have been on this site almost every day since Emily was dx...20 months ago. A friend who works at Children's Hospital and works with kids with eating disorders told me to check it out on the second day we were in the NICU. I still have no idea how he knew about this site. But, I am grateful.

What have I learned?
1. Let Emily be a kid. Many, many of the adult cf'ers here have said that over and over. She needs to LIVE. Daily, I fight my urge to "over-protect." I firmly beleive though, that she needs to be a normal, as Heather said.

2. What pseudomonas is and how it is treated. Our pulmononogist could not beleive it when I asked about psuedomonas at our first consult with her (Em was 7 days old). I had read about it here, and drawn the conclusion that we would probably not avoid it..so I asked the pulmo how aggressive she was willing to be in fighting it. A month later when Em cultured it, I got my answer. She is now PA free, for a year and counting.

3. Just being here and picking up the "lingo" has helped me immenslely. I go into each clinic visit with a list of questions I generated from being here. I think it helps me to make sure Em is getting the best possible care.

4. That I'm not alone. That other cf moms and dads feel like I do and have bad days. That there is always hope and that we have nothing if we don't have hope. That I need to make sure that my non-cf kid gets good care, too. That life will one day be normal.

5. The importance of good nutrition. I am always coming here and going through old threads to look for ideas for weight gain. I have also learned that we'll be ok if Em does get her g-tube in a few months (although I'm still going to fight like mad to help her gain so she doesn't need it....)

There are soooo many other things I could list. Generally, I think its safe to say that I learned 90% of what I know about cf from this site. I honestly don't know where I'd be without it.

Jane · Jul 5, 2007

I can't begin to list the things I've learned here.

This site continues to provide education and support like no other place I've experienced. I have to echo the others who said mostly it lets me know I'm not alone in this fight.

Jane · Jul 5, 2007

I can't begin to list the things I've learned here.

This site continues to provide education and support like no other place I've experienced. I have to echo the others who said mostly it lets me know I'm not alone in this fight.

Jane · Jul 5, 2007

I can't begin to list the things I've learned here.

This site continues to provide education and support like no other place I've experienced. I have to echo the others who said mostly it lets me know I'm not alone in this fight.

Jane · Jul 5, 2007

I can't begin to list the things I've learned here.

This site continues to provide education and support like no other place I've experienced. I have to echo the others who said mostly it lets me know I'm not alone in this fight.

Jane · Jul 5, 2007

I can't begin to list the things I've learned here.

This site continues to provide education and support like no other place I've experienced. I have to echo the others who said mostly it lets me know I'm not alone in this fight.

Jane · Jul 5, 2007

I can't begin to list the things I've learned here.

This site continues to provide education and support like no other place I've experienced. I have to echo the others who said mostly it lets me know I'm not alone in this fight.

mom2lillian · Jul 5, 2007