CF article in the Washingtonian

izemmom

New member
OK, well, perhaps I shouldn't have read it while at work. It was longer than I expected...I had to have the kids take out their books and read silently so I could finish the article (shhhhh...don't tell my principal!). Also, it got me. Full tears which I had to wipe away before the kids saw.

I fully beleive that Emily will live life to the fullest, but the thought of her taking her medical care into her own hands at age...whatever scares the bejezus out of me. I'm not going to do well with her seeing her docs twice a year if that's what she decides to do. I'm going to have a damn hard time not getting the Pulmozyme for her when she runs out...She's little now, I call the shots (well, Dad and I do...). What will I do when she turnd into the person who is willing to compromise with CF like Peter is? More importantly, how do I make sure she doesn't turn itno that person?

I know lots of kids like I'll bet Peter was in High school. I think the analogy about him wanting to imrpove is golf game but not wanting to work at it is fitting. When I was the director of a private tutoring center we saw tons of kids like that. They wanted A's, were smart enough to get A's, jsut didnt' want to work for A's. (cooincidently, the center was in Peter's parent's neighborhood based on the description in the story...suburbabn Milwaukee, bluff overlooking the lake, pond in the front yard...yeah, I've got a bit of a stalker tendancy...)

Anyway, that job was before I had kids and I used to wonder how I could keep my own kids from falling into the "good enough" trap regarding academics every time I talked to a frustrated parent. It wasn't until 20 minutes ago that I even considered that the trap will lurk in Emily's health care regiem, too. It scares me.

I get where Peter's coming from. I neglect my health, too. Haven't been to the OB since my last post-baby checkup, let a condition with my feet go way to long and have had constant pain for months, have been told to get screened for diabetes and haven't gotten around to calling the lab... I feel as good as I think I should for the amout of time I spend on myself, and that's about it. So I get what must be feeling.

But, I obviously understand his sister's point of view, too.

Maybe this article gets me so much because I know Dr. Biller. If she's still working at Froedert when Emily turns 20, she'll be Emily's doctor. She came to see us in the NICU and more than once answered my calls to the cf clinic when our Docs at Children's were out of town. But, that means that Peter is likely a product of our pediatric program, too. To what extent does Peter's attitude (and the attitude/knowledge level of his parents) reflect the program he grew up in?

Uuuuugh. I had been happily living in my state of denial about the future until I clicked on that link. Now I'm all riled up, as evidenced by the length of this post. Which is good (the riled up part, not the length, sorry about that...)

Thanks, Scott for posting it. Think I'll tuck it into my folder for the next clinic visit, it's a good starting point for discussion.
 

izemmom

New member
OK, well, perhaps I shouldn't have read it while at work. It was longer than I expected...I had to have the kids take out their books and read silently so I could finish the article (shhhhh...don't tell my principal!). Also, it got me. Full tears which I had to wipe away before the kids saw.

I fully beleive that Emily will live life to the fullest, but the thought of her taking her medical care into her own hands at age...whatever scares the bejezus out of me. I'm not going to do well with her seeing her docs twice a year if that's what she decides to do. I'm going to have a damn hard time not getting the Pulmozyme for her when she runs out...She's little now, I call the shots (well, Dad and I do...). What will I do when she turnd into the person who is willing to compromise with CF like Peter is? More importantly, how do I make sure she doesn't turn itno that person?

I know lots of kids like I'll bet Peter was in High school. I think the analogy about him wanting to imrpove is golf game but not wanting to work at it is fitting. When I was the director of a private tutoring center we saw tons of kids like that. They wanted A's, were smart enough to get A's, jsut didnt' want to work for A's. (cooincidently, the center was in Peter's parent's neighborhood based on the description in the story...suburbabn Milwaukee, bluff overlooking the lake, pond in the front yard...yeah, I've got a bit of a stalker tendancy...)

Anyway, that job was before I had kids and I used to wonder how I could keep my own kids from falling into the "good enough" trap regarding academics every time I talked to a frustrated parent. It wasn't until 20 minutes ago that I even considered that the trap will lurk in Emily's health care regiem, too. It scares me.

I get where Peter's coming from. I neglect my health, too. Haven't been to the OB since my last post-baby checkup, let a condition with my feet go way to long and have had constant pain for months, have been told to get screened for diabetes and haven't gotten around to calling the lab... I feel as good as I think I should for the amout of time I spend on myself, and that's about it. So I get what must be feeling.

But, I obviously understand his sister's point of view, too.

Maybe this article gets me so much because I know Dr. Biller. If she's still working at Froedert when Emily turns 20, she'll be Emily's doctor. She came to see us in the NICU and more than once answered my calls to the cf clinic when our Docs at Children's were out of town. But, that means that Peter is likely a product of our pediatric program, too. To what extent does Peter's attitude (and the attitude/knowledge level of his parents) reflect the program he grew up in?

Uuuuugh. I had been happily living in my state of denial about the future until I clicked on that link. Now I'm all riled up, as evidenced by the length of this post. Which is good (the riled up part, not the length, sorry about that...)

Thanks, Scott for posting it. Think I'll tuck it into my folder for the next clinic visit, it's a good starting point for discussion.
 

izemmom

New member
OK, well, perhaps I shouldn't have read it while at work. It was longer than I expected...I had to have the kids take out their books and read silently so I could finish the article (shhhhh...don't tell my principal!). Also, it got me. Full tears which I had to wipe away before the kids saw.

I fully beleive that Emily will live life to the fullest, but the thought of her taking her medical care into her own hands at age...whatever scares the bejezus out of me. I'm not going to do well with her seeing her docs twice a year if that's what she decides to do. I'm going to have a damn hard time not getting the Pulmozyme for her when she runs out...She's little now, I call the shots (well, Dad and I do...). What will I do when she turnd into the person who is willing to compromise with CF like Peter is? More importantly, how do I make sure she doesn't turn itno that person?

I know lots of kids like I'll bet Peter was in High school. I think the analogy about him wanting to imrpove is golf game but not wanting to work at it is fitting. When I was the director of a private tutoring center we saw tons of kids like that. They wanted A's, were smart enough to get A's, jsut didnt' want to work for A's. (cooincidently, the center was in Peter's parent's neighborhood based on the description in the story...suburbabn Milwaukee, bluff overlooking the lake, pond in the front yard...yeah, I've got a bit of a stalker tendancy...)

Anyway, that job was before I had kids and I used to wonder how I could keep my own kids from falling into the "good enough" trap regarding academics every time I talked to a frustrated parent. It wasn't until 20 minutes ago that I even considered that the trap will lurk in Emily's health care regiem, too. It scares me.

I get where Peter's coming from. I neglect my health, too. Haven't been to the OB since my last post-baby checkup, let a condition with my feet go way to long and have had constant pain for months, have been told to get screened for diabetes and haven't gotten around to calling the lab... I feel as good as I think I should for the amout of time I spend on myself, and that's about it. So I get what must be feeling.

But, I obviously understand his sister's point of view, too.

Maybe this article gets me so much because I know Dr. Biller. If she's still working at Froedert when Emily turns 20, she'll be Emily's doctor. She came to see us in the NICU and more than once answered my calls to the cf clinic when our Docs at Children's were out of town. But, that means that Peter is likely a product of our pediatric program, too. To what extent does Peter's attitude (and the attitude/knowledge level of his parents) reflect the program he grew up in?

Uuuuugh. I had been happily living in my state of denial about the future until I clicked on that link. Now I'm all riled up, as evidenced by the length of this post. Which is good (the riled up part, not the length, sorry about that...)

Thanks, Scott for posting it. Think I'll tuck it into my folder for the next clinic visit, it's a good starting point for discussion.
 

izemmom

New member
OK, well, perhaps I shouldn't have read it while at work. It was longer than I expected...I had to have the kids take out their books and read silently so I could finish the article (shhhhh...don't tell my principal!). Also, it got me. Full tears which I had to wipe away before the kids saw.

I fully beleive that Emily will live life to the fullest, but the thought of her taking her medical care into her own hands at age...whatever scares the bejezus out of me. I'm not going to do well with her seeing her docs twice a year if that's what she decides to do. I'm going to have a damn hard time not getting the Pulmozyme for her when she runs out...She's little now, I call the shots (well, Dad and I do...). What will I do when she turnd into the person who is willing to compromise with CF like Peter is? More importantly, how do I make sure she doesn't turn itno that person?

I know lots of kids like I'll bet Peter was in High school. I think the analogy about him wanting to imrpove is golf game but not wanting to work at it is fitting. When I was the director of a private tutoring center we saw tons of kids like that. They wanted A's, were smart enough to get A's, jsut didnt' want to work for A's. (cooincidently, the center was in Peter's parent's neighborhood based on the description in the story...suburbabn Milwaukee, bluff overlooking the lake, pond in the front yard...yeah, I've got a bit of a stalker tendancy...)

Anyway, that job was before I had kids and I used to wonder how I could keep my own kids from falling into the "good enough" trap regarding academics every time I talked to a frustrated parent. It wasn't until 20 minutes ago that I even considered that the trap will lurk in Emily's health care regiem, too. It scares me.

I get where Peter's coming from. I neglect my health, too. Haven't been to the OB since my last post-baby checkup, let a condition with my feet go way to long and have had constant pain for months, have been told to get screened for diabetes and haven't gotten around to calling the lab... I feel as good as I think I should for the amout of time I spend on myself, and that's about it. So I get what must be feeling.

But, I obviously understand his sister's point of view, too.

Maybe this article gets me so much because I know Dr. Biller. If she's still working at Froedert when Emily turns 20, she'll be Emily's doctor. She came to see us in the NICU and more than once answered my calls to the cf clinic when our Docs at Children's were out of town. But, that means that Peter is likely a product of our pediatric program, too. To what extent does Peter's attitude (and the attitude/knowledge level of his parents) reflect the program he grew up in?

Uuuuugh. I had been happily living in my state of denial about the future until I clicked on that link. Now I'm all riled up, as evidenced by the length of this post. Which is good (the riled up part, not the length, sorry about that...)

Thanks, Scott for posting it. Think I'll tuck it into my folder for the next clinic visit, it's a good starting point for discussion.
 

izemmom

New member
OK, well, perhaps I shouldn't have read it while at work. It was longer than I expected...I had to have the kids take out their books and read silently so I could finish the article (shhhhh...don't tell my principal!). Also, it got me. Full tears which I had to wipe away before the kids saw.

I fully beleive that Emily will live life to the fullest, but the thought of her taking her medical care into her own hands at age...whatever scares the bejezus out of me. I'm not going to do well with her seeing her docs twice a year if that's what she decides to do. I'm going to have a damn hard time not getting the Pulmozyme for her when she runs out...She's little now, I call the shots (well, Dad and I do...). What will I do when she turnd into the person who is willing to compromise with CF like Peter is? More importantly, how do I make sure she doesn't turn itno that person?

I know lots of kids like I'll bet Peter was in High school. I think the analogy about him wanting to imrpove is golf game but not wanting to work at it is fitting. When I was the director of a private tutoring center we saw tons of kids like that. They wanted A's, were smart enough to get A's, jsut didnt' want to work for A's. (cooincidently, the center was in Peter's parent's neighborhood based on the description in the story...suburbabn Milwaukee, bluff overlooking the lake, pond in the front yard...yeah, I've got a bit of a stalker tendancy...)

Anyway, that job was before I had kids and I used to wonder how I could keep my own kids from falling into the "good enough" trap regarding academics every time I talked to a frustrated parent. It wasn't until 20 minutes ago that I even considered that the trap will lurk in Emily's health care regiem, too. It scares me.

I get where Peter's coming from. I neglect my health, too. Haven't been to the OB since my last post-baby checkup, let a condition with my feet go way to long and have had constant pain for months, have been told to get screened for diabetes and haven't gotten around to calling the lab... I feel as good as I think I should for the amout of time I spend on myself, and that's about it. So I get what must be feeling.

But, I obviously understand his sister's point of view, too.

Maybe this article gets me so much because I know Dr. Biller. If she's still working at Froedert when Emily turns 20, she'll be Emily's doctor. She came to see us in the NICU and more than once answered my calls to the cf clinic when our Docs at Children's were out of town. But, that means that Peter is likely a product of our pediatric program, too. To what extent does Peter's attitude (and the attitude/knowledge level of his parents) reflect the program he grew up in?

Uuuuugh. I had been happily living in my state of denial about the future until I clicked on that link. Now I'm all riled up, as evidenced by the length of this post. Which is good (the riled up part, not the length, sorry about that...)

Thanks, Scott for posting it. Think I'll tuck it into my folder for the next clinic visit, it's a good starting point for discussion.
 

izemmom

New member
Oh, by the way, my kids were at music class while I wrote the above post...I'm not neglecting them or wasting their parents tuition money! <img src="i/expressions/face-icon-small-tongue.gif" border="0">
 

izemmom

New member
Oh, by the way, my kids were at music class while I wrote the above post...I'm not neglecting them or wasting their parents tuition money! <img src="i/expressions/face-icon-small-tongue.gif" border="0">
 

izemmom

New member
Oh, by the way, my kids were at music class while I wrote the above post...I'm not neglecting them or wasting their parents tuition money! <img src="i/expressions/face-icon-small-tongue.gif" border="0">
 

izemmom

New member
Oh, by the way, my kids were at music class while I wrote the above post...I'm not neglecting them or wasting their parents tuition money! <img src="i/expressions/face-icon-small-tongue.gif" border="0">
 

izemmom

New member
Oh, by the way, my kids were at music class while I wrote the above post...I'm not neglecting them or wasting their parents tuition money! <img src="i/expressions/face-icon-small-tongue.gif" border="0">
 

ktsmom

New member
<i>"It mimics a hormone that hydrates the lungs as the patient exercises; the drug keeps this process turned on all the time to clear mucus from CF airways. Boucher had explained that even without the drug, CF patients can hydrate their lungs through exercise, especially jogging.

"While you're running," I told Peter, "it's like you don't have CF.""</i>

I've never heard it put quite like that - guess I'll be buying our Katy a treadmill. ***half joking***

Great article; thanks for sharing.

Tami - right there with you babe <img src="i/expressions/face-icon-small-sad.gif" border="0">
 

ktsmom

New member
<i>"It mimics a hormone that hydrates the lungs as the patient exercises; the drug keeps this process turned on all the time to clear mucus from CF airways. Boucher had explained that even without the drug, CF patients can hydrate their lungs through exercise, especially jogging.

"While you're running," I told Peter, "it's like you don't have CF.""</i>

I've never heard it put quite like that - guess I'll be buying our Katy a treadmill. ***half joking***

Great article; thanks for sharing.

Tami - right there with you babe <img src="i/expressions/face-icon-small-sad.gif" border="0">
 

ktsmom

New member
<i>"It mimics a hormone that hydrates the lungs as the patient exercises; the drug keeps this process turned on all the time to clear mucus from CF airways. Boucher had explained that even without the drug, CF patients can hydrate their lungs through exercise, especially jogging.

"While you're running," I told Peter, "it's like you don't have CF.""</i>

I've never heard it put quite like that - guess I'll be buying our Katy a treadmill. ***half joking***

Great article; thanks for sharing.

Tami - right there with you babe <img src="i/expressions/face-icon-small-sad.gif" border="0">
 

ktsmom

New member
<i>"It mimics a hormone that hydrates the lungs as the patient exercises; the drug keeps this process turned on all the time to clear mucus from CF airways. Boucher had explained that even without the drug, CF patients can hydrate their lungs through exercise, especially jogging.

"While you're running," I told Peter, "it's like you don't have CF.""</i>

I've never heard it put quite like that - guess I'll be buying our Katy a treadmill. ***half joking***

Great article; thanks for sharing.

Tami - right there with you babe <img src="i/expressions/face-icon-small-sad.gif" border="0">
 

ktsmom

New member
<i>"It mimics a hormone that hydrates the lungs as the patient exercises; the drug keeps this process turned on all the time to clear mucus from CF airways. Boucher had explained that even without the drug, CF patients can hydrate their lungs through exercise, especially jogging.

"While you're running," I told Peter, "it's like you don't have CF.""</i>

I've never heard it put quite like that - guess I'll be buying our Katy a treadmill. ***half joking***

Great article; thanks for sharing.

Tami - right there with you babe <img src="i/expressions/face-icon-small-sad.gif" border="0">
 
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