My heart broke this afternoon...

M

Mommafirst

Guest
Hey Em --

First of all HUGS to you. I know this is the day you've been preparing for and yet hoping it would never come. At 15 months its not a joy to do treatments. The best I can do is promise that they get easier over time. BEG your clinic to consider the vest, it made a huge difference for us. We've come a long way from miserable treatments where Alyssa cried the whole time, to her now putting on her vest and doing the buckles alone and pressing all the buttons to start it. Barney (ugh I hate that dinosaur) has been great, she loves the music. We dance, sing, tickle, laugh or just cuddle. But it didn't happen overnight.

As for breathing treatments, I was getting more albuterol than she was, so our pulm let us switch to an inhaler (2 seconds vs. 20 minutes rocks!!). We're gonna have the fight start soon though, because we'll start pulmozyme come January -- and as far as I know they don't make an inhaler for that. So I'll be pulling out the nebs again. But I know that patience and love will eventually pay off and it will just be part of her routine. You'll get there Em, so will Abby!!!
 
M

Mommafirst

Guest
Hey Em --

First of all HUGS to you. I know this is the day you've been preparing for and yet hoping it would never come. At 15 months its not a joy to do treatments. The best I can do is promise that they get easier over time. BEG your clinic to consider the vest, it made a huge difference for us. We've come a long way from miserable treatments where Alyssa cried the whole time, to her now putting on her vest and doing the buckles alone and pressing all the buttons to start it. Barney (ugh I hate that dinosaur) has been great, she loves the music. We dance, sing, tickle, laugh or just cuddle. But it didn't happen overnight.

As for breathing treatments, I was getting more albuterol than she was, so our pulm let us switch to an inhaler (2 seconds vs. 20 minutes rocks!!). We're gonna have the fight start soon though, because we'll start pulmozyme come January -- and as far as I know they don't make an inhaler for that. So I'll be pulling out the nebs again. But I know that patience and love will eventually pay off and it will just be part of her routine. You'll get there Em, so will Abby!!!
 
M

Mommafirst

Guest
Hey Em --

First of all HUGS to you. I know this is the day you've been preparing for and yet hoping it would never come. At 15 months its not a joy to do treatments. The best I can do is promise that they get easier over time. BEG your clinic to consider the vest, it made a huge difference for us. We've come a long way from miserable treatments where Alyssa cried the whole time, to her now putting on her vest and doing the buckles alone and pressing all the buttons to start it. Barney (ugh I hate that dinosaur) has been great, she loves the music. We dance, sing, tickle, laugh or just cuddle. But it didn't happen overnight.

As for breathing treatments, I was getting more albuterol than she was, so our pulm let us switch to an inhaler (2 seconds vs. 20 minutes rocks!!). We're gonna have the fight start soon though, because we'll start pulmozyme come January -- and as far as I know they don't make an inhaler for that. So I'll be pulling out the nebs again. But I know that patience and love will eventually pay off and it will just be part of her routine. You'll get there Em, so will Abby!!!
 
M

Mommafirst

Guest
Hey Em --

First of all HUGS to you. I know this is the day you've been preparing for and yet hoping it would never come. At 15 months its not a joy to do treatments. The best I can do is promise that they get easier over time. BEG your clinic to consider the vest, it made a huge difference for us. We've come a long way from miserable treatments where Alyssa cried the whole time, to her now putting on her vest and doing the buckles alone and pressing all the buttons to start it. Barney (ugh I hate that dinosaur) has been great, she loves the music. We dance, sing, tickle, laugh or just cuddle. But it didn't happen overnight.

As for breathing treatments, I was getting more albuterol than she was, so our pulm let us switch to an inhaler (2 seconds vs. 20 minutes rocks!!). We're gonna have the fight start soon though, because we'll start pulmozyme come January -- and as far as I know they don't make an inhaler for that. So I'll be pulling out the nebs again. But I know that patience and love will eventually pay off and it will just be part of her routine. You'll get there Em, so will Abby!!!
 
M

Mommafirst

Guest
Hey Em --

First of all HUGS to you. I know this is the day you've been preparing for and yet hoping it would never come. At 15 months its not a joy to do treatments. The best I can do is promise that they get easier over time. BEG your clinic to consider the vest, it made a huge difference for us. We've come a long way from miserable treatments where Alyssa cried the whole time, to her now putting on her vest and doing the buckles alone and pressing all the buttons to start it. Barney (ugh I hate that dinosaur) has been great, she loves the music. We dance, sing, tickle, laugh or just cuddle. But it didn't happen overnight.

As for breathing treatments, I was getting more albuterol than she was, so our pulm let us switch to an inhaler (2 seconds vs. 20 minutes rocks!!). We're gonna have the fight start soon though, because we'll start pulmozyme come January -- and as far as I know they don't make an inhaler for that. So I'll be pulling out the nebs again. But I know that patience and love will eventually pay off and it will just be part of her routine. You'll get there Em, so will Abby!!!
 
A

AbbysMama

New member
Thanks for the ideas. We are going to pursue the vest so we won't have to fight with the treatments.

The CPT is rough, but the breathing treatments are horrible because she doesn't want the mask on her face.

Dave reassured me that the appointment was productive and that the doctor at the clinic has just started these treatments as preventative measures. He also said that the doctor was just concerned that without these early "aggressive" treatments her cold or whatever we want to call it would develop into something worse (RSV, Pneumonia, etc.).

I am so heartbroken because this is the first time I have looked at my child and all I saw was CF. I totally freaked out after I put her to bed. I haven't cried yet, but I know it is coming...

This is the reality of CF and we are still asymptomatic? I'm totally overwhelmed.
 
A

AbbysMama

New member
Thanks for the ideas. We are going to pursue the vest so we won't have to fight with the treatments.

The CPT is rough, but the breathing treatments are horrible because she doesn't want the mask on her face.

Dave reassured me that the appointment was productive and that the doctor at the clinic has just started these treatments as preventative measures. He also said that the doctor was just concerned that without these early "aggressive" treatments her cold or whatever we want to call it would develop into something worse (RSV, Pneumonia, etc.).

I am so heartbroken because this is the first time I have looked at my child and all I saw was CF. I totally freaked out after I put her to bed. I haven't cried yet, but I know it is coming...

This is the reality of CF and we are still asymptomatic? I'm totally overwhelmed.
 
A

AbbysMama

New member
Thanks for the ideas. We are going to pursue the vest so we won't have to fight with the treatments.

The CPT is rough, but the breathing treatments are horrible because she doesn't want the mask on her face.

Dave reassured me that the appointment was productive and that the doctor at the clinic has just started these treatments as preventative measures. He also said that the doctor was just concerned that without these early "aggressive" treatments her cold or whatever we want to call it would develop into something worse (RSV, Pneumonia, etc.).

I am so heartbroken because this is the first time I have looked at my child and all I saw was CF. I totally freaked out after I put her to bed. I haven't cried yet, but I know it is coming...

This is the reality of CF and we are still asymptomatic? I'm totally overwhelmed.
 
A

AbbysMama

New member
Thanks for the ideas. We are going to pursue the vest so we won't have to fight with the treatments.

The CPT is rough, but the breathing treatments are horrible because she doesn't want the mask on her face.

Dave reassured me that the appointment was productive and that the doctor at the clinic has just started these treatments as preventative measures. He also said that the doctor was just concerned that without these early "aggressive" treatments her cold or whatever we want to call it would develop into something worse (RSV, Pneumonia, etc.).

I am so heartbroken because this is the first time I have looked at my child and all I saw was CF. I totally freaked out after I put her to bed. I haven't cried yet, but I know it is coming...

This is the reality of CF and we are still asymptomatic? I'm totally overwhelmed.
 
A

AbbysMama

New member
Thanks for the ideas. We are going to pursue the vest so we won't have to fight with the treatments.

The CPT is rough, but the breathing treatments are horrible because she doesn't want the mask on her face.

Dave reassured me that the appointment was productive and that the doctor at the clinic has just started these treatments as preventative measures. He also said that the doctor was just concerned that without these early "aggressive" treatments her cold or whatever we want to call it would develop into something worse (RSV, Pneumonia, etc.).

I am so heartbroken because this is the first time I have looked at my child and all I saw was CF. I totally freaked out after I put her to bed. I haven't cried yet, but I know it is coming...

This is the reality of CF and we are still asymptomatic? I'm totally overwhelmed.
 
F

Foody

New member
Em...we started treatments around the same age and vest around 2 years old. Early on the only thing that worked was DVDs. Now he sits for books and we sometimes pick special DVD from the library for treatments (2x daily). He does treatments 3x during colds but then we go back to 2 once everything is cleared out. We combine the neb and the vest at the same time so he is on for 15 mintues max each time.

It does get easier...it is just like potty training or getting them to brush their teeth...it becomes routine and they don't resist too much.

We cried like babies the day our vest came and same with the nebulizer. It was a reality thing and it made me pissed/sad/frustrated on many levels at first. I felt bad mostly because it was a life time thing that he would someday take on. Now I see it as a health promoting part of his day just like exercise and eating right.

I'm sorry you guys are going through all this new stuff...sending support and positive thoughts your way.
 
F

Foody

New member
Em...we started treatments around the same age and vest around 2 years old. Early on the only thing that worked was DVDs. Now he sits for books and we sometimes pick special DVD from the library for treatments (2x daily). He does treatments 3x during colds but then we go back to 2 once everything is cleared out. We combine the neb and the vest at the same time so he is on for 15 mintues max each time.

It does get easier...it is just like potty training or getting them to brush their teeth...it becomes routine and they don't resist too much.

We cried like babies the day our vest came and same with the nebulizer. It was a reality thing and it made me pissed/sad/frustrated on many levels at first. I felt bad mostly because it was a life time thing that he would someday take on. Now I see it as a health promoting part of his day just like exercise and eating right.

I'm sorry you guys are going through all this new stuff...sending support and positive thoughts your way.
 
F

Foody

New member
Em...we started treatments around the same age and vest around 2 years old. Early on the only thing that worked was DVDs. Now he sits for books and we sometimes pick special DVD from the library for treatments (2x daily). He does treatments 3x during colds but then we go back to 2 once everything is cleared out. We combine the neb and the vest at the same time so he is on for 15 mintues max each time.

It does get easier...it is just like potty training or getting them to brush their teeth...it becomes routine and they don't resist too much.

We cried like babies the day our vest came and same with the nebulizer. It was a reality thing and it made me pissed/sad/frustrated on many levels at first. I felt bad mostly because it was a life time thing that he would someday take on. Now I see it as a health promoting part of his day just like exercise and eating right.

I'm sorry you guys are going through all this new stuff...sending support and positive thoughts your way.
 
F

Foody

New member
Em...we started treatments around the same age and vest around 2 years old. Early on the only thing that worked was DVDs. Now he sits for books and we sometimes pick special DVD from the library for treatments (2x daily). He does treatments 3x during colds but then we go back to 2 once everything is cleared out. We combine the neb and the vest at the same time so he is on for 15 mintues max each time.

It does get easier...it is just like potty training or getting them to brush their teeth...it becomes routine and they don't resist too much.

We cried like babies the day our vest came and same with the nebulizer. It was a reality thing and it made me pissed/sad/frustrated on many levels at first. I felt bad mostly because it was a life time thing that he would someday take on. Now I see it as a health promoting part of his day just like exercise and eating right.

I'm sorry you guys are going through all this new stuff...sending support and positive thoughts your way.
 
F

Foody

New member
Em...we started treatments around the same age and vest around 2 years old. Early on the only thing that worked was DVDs. Now he sits for books and we sometimes pick special DVD from the library for treatments (2x daily). He does treatments 3x during colds but then we go back to 2 once everything is cleared out. We combine the neb and the vest at the same time so he is on for 15 mintues max each time.

It does get easier...it is just like potty training or getting them to brush their teeth...it becomes routine and they don't resist too much.

We cried like babies the day our vest came and same with the nebulizer. It was a reality thing and it made me pissed/sad/frustrated on many levels at first. I felt bad mostly because it was a life time thing that he would someday take on. Now I see it as a health promoting part of his day just like exercise and eating right.

I'm sorry you guys are going through all this new stuff...sending support and positive thoughts your way.
 
G

GriffinsMama

New member
Hey, I just want to add that for my son ride on toys and interesting ways to sit and read or watch TV have been unbelievably helpful.

We have a nice buddy L ride-on firetruck plus helmet, we have a ride-on excavator plus construction helmet, We have a little mickey mouse ariplane, we have a tiny table and chair set so he can play with toys or read while doing his treatments. We give him options.

None of these things were super expensive. We bargain shopped at the local resale shops and online. The excavator was only 25 bucks! It's so worth the price because he chooses a movie or book that matches the theme usually. My apt is tiny! but I "park" the toys under my dining room table
 
G

GriffinsMama

New member
Hey, I just want to add that for my son ride on toys and interesting ways to sit and read or watch TV have been unbelievably helpful.

We have a nice buddy L ride-on firetruck plus helmet, we have a ride-on excavator plus construction helmet, We have a little mickey mouse ariplane, we have a tiny table and chair set so he can play with toys or read while doing his treatments. We give him options.

None of these things were super expensive. We bargain shopped at the local resale shops and online. The excavator was only 25 bucks! It's so worth the price because he chooses a movie or book that matches the theme usually. My apt is tiny! but I "park" the toys under my dining room table
 
G

GriffinsMama

New member
Hey, I just want to add that for my son ride on toys and interesting ways to sit and read or watch TV have been unbelievably helpful.

We have a nice buddy L ride-on firetruck plus helmet, we have a ride-on excavator plus construction helmet, We have a little mickey mouse ariplane, we have a tiny table and chair set so he can play with toys or read while doing his treatments. We give him options.

None of these things were super expensive. We bargain shopped at the local resale shops and online. The excavator was only 25 bucks! It's so worth the price because he chooses a movie or book that matches the theme usually. My apt is tiny! but I "park" the toys under my dining room table
 
G

GriffinsMama

New member
Hey, I just want to add that for my son ride on toys and interesting ways to sit and read or watch TV have been unbelievably helpful.

We have a nice buddy L ride-on firetruck plus helmet, we have a ride-on excavator plus construction helmet, We have a little mickey mouse ariplane, we have a tiny table and chair set so he can play with toys or read while doing his treatments. We give him options.

None of these things were super expensive. We bargain shopped at the local resale shops and online. The excavator was only 25 bucks! It's so worth the price because he chooses a movie or book that matches the theme usually. My apt is tiny! but I "park" the toys under my dining room table
 
G

GriffinsMama

New member
Hey, I just want to add that for my son ride on toys and interesting ways to sit and read or watch TV have been unbelievably helpful.

We have a nice buddy L ride-on firetruck plus helmet, we have a ride-on excavator plus construction helmet, We have a little mickey mouse ariplane, we have a tiny table and chair set so he can play with toys or read while doing his treatments. We give him options.

None of these things were super expensive. We bargain shopped at the local resale shops and online. The excavator was only 25 bucks! It's so worth the price because he chooses a movie or book that matches the theme usually. My apt is tiny! but I "park" the toys under my dining room table
 
You must log in or register to reply here.
Top