We just started Pulmozyme

[carrierae21]

I just wanted to thank everyone for all your input. It really helps when we start something new to be able to hear that other people have gone through this and that we too will survive! I guess that before when we were only doing enzymes, it didn't really seem like Cammie really had CF. I know that she really does, but it was just that she was doing so well that it didn't really sink in all the way (I'm sure that this doesn't make any sense at all) but now that we are starting the Pulmozyme it's like she really does have CF. It's not that I'm in denial, it just didn't seem like she was really suffering from it. I guess that's the theory, if she's not suffering from it.... keep her healthy and get her used to it now before she really needs it. She's actually doing much better with the neb after only a few days. I will definately pick out a few toys and keep them just for nebs... That's a great idea! Thanks!

 

[carrierae21]

I just wanted to thank everyone for all your input. It really helps when we start something new to be able to hear that other people have gone through this and that we too will survive! I guess that before when we were only doing enzymes, it didn't really seem like Cammie really had CF. I know that she really does, but it was just that she was doing so well that it didn't really sink in all the way (I'm sure that this doesn't make any sense at all) but now that we are starting the Pulmozyme it's like she really does have CF. It's not that I'm in denial, it just didn't seem like she was really suffering from it. I guess that's the theory, if she's not suffering from it.... keep her healthy and get her used to it now before she really needs it. She's actually doing much better with the neb after only a few days. I will definately pick out a few toys and keep them just for nebs... That's a great idea! Thanks!

 

[carrierae21]

I just wanted to thank everyone for all your input. It really helps when we start something new to be able to hear that other people have gone through this and that we too will survive! I guess that before when we were only doing enzymes, it didn't really seem like Cammie really had CF. I know that she really does, but it was just that she was doing so well that it didn't really sink in all the way (I'm sure that this doesn't make any sense at all) but now that we are starting the Pulmozyme it's like she really does have CF. It's not that I'm in denial, it just didn't seem like she was really suffering from it. I guess that's the theory, if she's not suffering from it.... keep her healthy and get her used to it now before she really needs it. She's actually doing much better with the neb after only a few days. I will definately pick out a few toys and keep them just for nebs... That's a great idea! Thanks!

 

[carrierae21]

I just wanted to thank everyone for all your input. It really helps when we start something new to be able to hear that other people have gone through this and that we too will survive! I guess that before when we were only doing enzymes, it didn't really seem like Cammie really had CF. I know that she really does, but it was just that she was doing so well that it didn't really sink in all the way (I'm sure that this doesn't make any sense at all) but now that we are starting the Pulmozyme it's like she really does have CF. It's not that I'm in denial, it just didn't seem like she was really suffering from it. I guess that's the theory, if she's not suffering from it.... keep her healthy and get her used to it now before she really needs it. She's actually doing much better with the neb after only a few days. I will definately pick out a few toys and keep them just for nebs... That's a great idea! Thanks!

 

[carrierae21]

I just wanted to thank everyone for all your input. It really helps when we start something new to be able to hear that other people have gone through this and that we too will survive! I guess that before when we were only doing enzymes, it didn't really seem like Cammie really had CF. I know that she really does, but it was just that she was doing so well that it didn't really sink in all the way (I'm sure that this doesn't make any sense at all) but now that we are starting the Pulmozyme it's like she really does have CF. It's not that I'm in denial, it just didn't seem like she was really suffering from it. I guess that's the theory, if she's not suffering from it.... keep her healthy and get her used to it now before she really needs it. She's actually doing much better with the neb after only a few days. I will definately pick out a few toys and keep them just for nebs... That's a great idea! Thanks!

 

[Ratatosk]

For us it was tobi, when DS was 3 months old and he cultured pseudomonas. Prior that we kept thinking it was all just a big mistake.

I think when DS was your daughters age, he discovered the evil purple dinosaur (barney) at daycare -- We SWORE he'd never learn about him, but it kept him busy during tobi nebs. So maybe you can have a tape or dvd of barney, elmo, teletubbies, just for during treatment times to keep her occupied.

 

[Ratatosk]

For us it was tobi, when DS was 3 months old and he cultured pseudomonas. Prior that we kept thinking it was all just a big mistake.

I think when DS was your daughters age, he discovered the evil purple dinosaur (barney) at daycare -- We SWORE he'd never learn about him, but it kept him busy during tobi nebs. So maybe you can have a tape or dvd of barney, elmo, teletubbies, just for during treatment times to keep her occupied.

 

[Ratatosk]

For us it was tobi, when DS was 3 months old and he cultured pseudomonas. Prior that we kept thinking it was all just a big mistake.

I think when DS was your daughters age, he discovered the evil purple dinosaur (barney) at daycare -- We SWORE he'd never learn about him, but it kept him busy during tobi nebs. So maybe you can have a tape or dvd of barney, elmo, teletubbies, just for during treatment times to keep her occupied.

 

[Ratatosk]

For us it was tobi, when DS was 3 months old and he cultured pseudomonas. Prior that we kept thinking it was all just a big mistake.

I think when DS was your daughters age, he discovered the evil purple dinosaur (barney) at daycare -- We SWORE he'd never learn about him, but it kept him busy during tobi nebs. So maybe you can have a tape or dvd of barney, elmo, teletubbies, just for during treatment times to keep her occupied.

 

[Ratatosk]

For us it was tobi, when DS was 3 months old and he cultured pseudomonas. Prior that we kept thinking it was all just a big mistake.
<br />
<br />I think when DS was your daughters age, he discovered the evil purple dinosaur (barney) at daycare -- We SWORE he'd never learn about him, but it kept him busy during tobi nebs. So maybe you can have a tape or dvd of barney, elmo, teletubbies, just for during treatment times to keep her occupied.

 

[shimmereestar]

Hi there,


Ellie has been on pulmozyne 2x a day since she was diagnosed at 2 months. It just seems like part of our routine. We are also on HTS once a day. Our morning routine is pretty long, but she's usually asleep. She's usually asleep at night too or falls asleep during her treatment. She also nebs xopenex 4x a day. All of this is preventative, but she had a rough start. When she's sick (like now<img src="i/expressions/face-icon-small-sad.gif" border="0"> ) We up her xop. to 6x a day. It's a lot, but it seems pretty normal now<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[shimmereestar]

Hi there,


Ellie has been on pulmozyne 2x a day since she was diagnosed at 2 months. It just seems like part of our routine. We are also on HTS once a day. Our morning routine is pretty long, but she's usually asleep. She's usually asleep at night too or falls asleep during her treatment. She also nebs xopenex 4x a day. All of this is preventative, but she had a rough start. When she's sick (like now<img src="i/expressions/face-icon-small-sad.gif" border="0"> ) We up her xop. to 6x a day. It's a lot, but it seems pretty normal now<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[shimmereestar]

Hi there,


Ellie has been on pulmozyne 2x a day since she was diagnosed at 2 months. It just seems like part of our routine. We are also on HTS once a day. Our morning routine is pretty long, but she's usually asleep. She's usually asleep at night too or falls asleep during her treatment. She also nebs xopenex 4x a day. All of this is preventative, but she had a rough start. When she's sick (like now<img src="i/expressions/face-icon-small-sad.gif" border="0"> ) We up her xop. to 6x a day. It's a lot, but it seems pretty normal now<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[shimmereestar]

Hi there,


Ellie has been on pulmozyne 2x a day since she was diagnosed at 2 months. It just seems like part of our routine. We are also on HTS once a day. Our morning routine is pretty long, but she's usually asleep. She's usually asleep at night too or falls asleep during her treatment. She also nebs xopenex 4x a day. All of this is preventative, but she had a rough start. When she's sick (like now<img src="i/expressions/face-icon-small-sad.gif" border="0"> ) We up her xop. to 6x a day. It's a lot, but it seems pretty normal now<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[shimmereestar]

Hi there,
<br />
<br />
<br />Ellie has been on pulmozyne 2x a day since she was diagnosed at 2 months. It just seems like part of our routine. We are also on HTS once a day. Our morning routine is pretty long, but she's usually asleep. She's usually asleep at night too or falls asleep during her treatment. She also nebs xopenex 4x a day. All of this is preventative, but she had a rough start. When she's sick (like now<img src="i/expressions/face-icon-small-sad.gif" border="0"> ) We up her xop. to 6x a day. It's a lot, but it seems pretty normal now<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[monkey]

Hello Carrie,

Boy, do I ever understand the feelings that you are going through! Our Ryan, who is now 8, probably started when he was 4 or 5 and it was shocking to us at the time. His lungs seemed crystal clear, so it was an painful affirmation of the grim reality that we were facing. I remember both Lora and I cried over this prescription....it was very tough to cope with.

Now, 3 or 4 years later, I have to tell you.....we are very grateful for Pulmozyme, because it's has flat-out helped keep our little Mr Monkey out of the hospital. Period. The bottom line is the stuff works, VERY well. YOU MUST look at it from the perspective that it is going to keep your little Cammie healthy. It will! Trust me....over time, you will come to grips with it and ultimately, you will also be grateful that Cammie is on this wonderful drug earlier than later.

Hang in there Carrie! This is for-the-better....

Dan
The Monkey's Dad

 

[monkey]

Hello Carrie,

Boy, do I ever understand the feelings that you are going through! Our Ryan, who is now 8, probably started when he was 4 or 5 and it was shocking to us at the time. His lungs seemed crystal clear, so it was an painful affirmation of the grim reality that we were facing. I remember both Lora and I cried over this prescription....it was very tough to cope with.

Now, 3 or 4 years later, I have to tell you.....we are very grateful for Pulmozyme, because it's has flat-out helped keep our little Mr Monkey out of the hospital. Period. The bottom line is the stuff works, VERY well. YOU MUST look at it from the perspective that it is going to keep your little Cammie healthy. It will! Trust me....over time, you will come to grips with it and ultimately, you will also be grateful that Cammie is on this wonderful drug earlier than later.

Hang in there Carrie! This is for-the-better....

Dan
The Monkey's Dad

 

[monkey]

Hello Carrie,

Boy, do I ever understand the feelings that you are going through! Our Ryan, who is now 8, probably started when he was 4 or 5 and it was shocking to us at the time. His lungs seemed crystal clear, so it was an painful affirmation of the grim reality that we were facing. I remember both Lora and I cried over this prescription....it was very tough to cope with.

Now, 3 or 4 years later, I have to tell you.....we are very grateful for Pulmozyme, because it's has flat-out helped keep our little Mr Monkey out of the hospital. Period. The bottom line is the stuff works, VERY well. YOU MUST look at it from the perspective that it is going to keep your little Cammie healthy. It will! Trust me....over time, you will come to grips with it and ultimately, you will also be grateful that Cammie is on this wonderful drug earlier than later.

Hang in there Carrie! This is for-the-better....

Dan
The Monkey's Dad

 

[monkey]

Hello Carrie,

Boy, do I ever understand the feelings that you are going through! Our Ryan, who is now 8, probably started when he was 4 or 5 and it was shocking to us at the time. His lungs seemed crystal clear, so it was an painful affirmation of the grim reality that we were facing. I remember both Lora and I cried over this prescription....it was very tough to cope with.

Now, 3 or 4 years later, I have to tell you.....we are very grateful for Pulmozyme, because it's has flat-out helped keep our little Mr Monkey out of the hospital. Period. The bottom line is the stuff works, VERY well. YOU MUST look at it from the perspective that it is going to keep your little Cammie healthy. It will! Trust me....over time, you will come to grips with it and ultimately, you will also be grateful that Cammie is on this wonderful drug earlier than later.

Hang in there Carrie! This is for-the-better....

Dan
The Monkey's Dad

 

[monkey]

Hello Carrie,
<br />
<br />Boy, do I ever understand the feelings that you are going through! Our Ryan, who is now 8, probably started when he was 4 or 5 and it was shocking to us at the time. His lungs seemed crystal clear, so it was an painful affirmation of the grim reality that we were facing. I remember both Lora and I cried over this prescription....it was very tough to cope with.
<br />
<br />Now, 3 or 4 years later, I have to tell you.....we are very grateful for Pulmozyme, because it's has flat-out helped keep our little Mr Monkey out of the hospital. Period. The bottom line is the stuff works, VERY well. YOU MUST look at it from the perspective that it is going to keep your little Cammie healthy. It will! Trust me....over time, you will come to grips with it and ultimately, you will also be grateful that Cammie is on this wonderful drug earlier than later.
<br />
<br />Hang in there Carrie! This is for-the-better....
<br />
<br />Dan
<br />The Monkey's Dad
<br />
<br />