Need some help from the believers today

[ktsmom]

CF doc appointment went great, and I kept my head about me and was able to ask the questions that I already know the answers to, but I needed to hear the answers again from the doc.

And I need to really, really believe the answers today, because I've got one foot in the hopeful, positive world, but one foot still in the how-can-this-be-happening-to-my-daughter world. I'm frustrated with myself for not being able to get both feet firmly planted where they need to be!

The questions generally had to do with the benefits of all of this preventive treatment we are doing for Katy's lungs. He wants to add Hypertonic Saline and Albuterol to her treatments. So now we will do Albuterol, HS, Pulmo, and CPT plus TOBI in the "on" months. And to think that I wondered if I had overdone it when I tried to explain her treatment regimen on her montage!

I feel like I've almost turned the corner - these treatments are positive opportunities to keep Katy well, to keep her lungs healthy, to extend her life.

I'm almost there! But as Donkey says in one of the Shrek movies: "I think I need a hug". Thanks for listening.

 

[ktsmom]

CF doc appointment went great, and I kept my head about me and was able to ask the questions that I already know the answers to, but I needed to hear the answers again from the doc.

And I need to really, really believe the answers today, because I've got one foot in the hopeful, positive world, but one foot still in the how-can-this-be-happening-to-my-daughter world. I'm frustrated with myself for not being able to get both feet firmly planted where they need to be!

The questions generally had to do with the benefits of all of this preventive treatment we are doing for Katy's lungs. He wants to add Hypertonic Saline and Albuterol to her treatments. So now we will do Albuterol, HS, Pulmo, and CPT plus TOBI in the "on" months. And to think that I wondered if I had overdone it when I tried to explain her treatment regimen on her montage!

I feel like I've almost turned the corner - these treatments are positive opportunities to keep Katy well, to keep her lungs healthy, to extend her life.

I'm almost there! But as Donkey says in one of the Shrek movies: "I think I need a hug". Thanks for listening.

 

[ktsmom]

CF doc appointment went great, and I kept my head about me and was able to ask the questions that I already know the answers to, but I needed to hear the answers again from the doc.

And I need to really, really believe the answers today, because I've got one foot in the hopeful, positive world, but one foot still in the how-can-this-be-happening-to-my-daughter world. I'm frustrated with myself for not being able to get both feet firmly planted where they need to be!

The questions generally had to do with the benefits of all of this preventive treatment we are doing for Katy's lungs. He wants to add Hypertonic Saline and Albuterol to her treatments. So now we will do Albuterol, HS, Pulmo, and CPT plus TOBI in the "on" months. And to think that I wondered if I had overdone it when I tried to explain her treatment regimen on her montage!

I feel like I've almost turned the corner - these treatments are positive opportunities to keep Katy well, to keep her lungs healthy, to extend her life.

I'm almost there! But as Donkey says in one of the Shrek movies: "I think I need a hug". Thanks for listening.

 

[JazzysMom]

Here is your HUG!!!! I think its good to have one foot in the hopeful positive world and one foot in the I cant believe this is happening world. I think you find a balace there.

 

[JazzysMom]

Here is your HUG!!!! I think its good to have one foot in the hopeful positive world and one foot in the I cant believe this is happening world. I think you find a balace there.

 

[JazzysMom]

Here is your HUG!!!! I think its good to have one foot in the hopeful positive world and one foot in the I cant believe this is happening world. I think you find a balace there.

 

[Ratatosk]

I think it's just the idea of adding one more thing and it brings home that our children really do have CF. At least that's how I felt over a year ago when DS's doctor added zithromax and pulmozyme. For the longest time when I mixed drugs or got the pulmo out of the fridge, I just got resentful. I realize it's for the best, but darn it, "IT JUST ISN'T FAIR". Stomping my feet!

Just think how great you'll feel when you look back in a few years and think -- Wow, Katy's healthier than WE are and these things really DID make a difference.

I'm sorta dreading DS's appointment later in the month -- fear of the unknown, fear of "oh no, NOW what is he going to add..."

 

[Ratatosk]

I think it's just the idea of adding one more thing and it brings home that our children really do have CF. At least that's how I felt over a year ago when DS's doctor added zithromax and pulmozyme. For the longest time when I mixed drugs or got the pulmo out of the fridge, I just got resentful. I realize it's for the best, but darn it, "IT JUST ISN'T FAIR". Stomping my feet!

Just think how great you'll feel when you look back in a few years and think -- Wow, Katy's healthier than WE are and these things really DID make a difference.

I'm sorta dreading DS's appointment later in the month -- fear of the unknown, fear of "oh no, NOW what is he going to add..."

 

[Ratatosk]

I think it's just the idea of adding one more thing and it brings home that our children really do have CF. At least that's how I felt over a year ago when DS's doctor added zithromax and pulmozyme. For the longest time when I mixed drugs or got the pulmo out of the fridge, I just got resentful. I realize it's for the best, but darn it, "IT JUST ISN'T FAIR". Stomping my feet!

Just think how great you'll feel when you look back in a few years and think -- Wow, Katy's healthier than WE are and these things really DID make a difference.

I'm sorta dreading DS's appointment later in the month -- fear of the unknown, fear of "oh no, NOW what is he going to add..."

 

[NoExcuses]

these treatments will add years.

hang in there. you're are investing in her life. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[NoExcuses]

these treatments will add years.

hang in there. you're are investing in her life. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[NoExcuses]

these treatments will add years.

hang in there. you're are investing in her life. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[MYBOY]

Dana - I can totally relate to you! I cryed when they called and told me Tanner had psuedo and had to go on TOBI - I think he was 7. Then this last year his lung function went down alittle - they started him on azithromycin and pulmozyme. That didn't hit me til the next day on the way to work - so I was a mess at work and of course then you have to explain it to everyone - and cry more! Anyway - yes I know he needs them but I just feel so bad (or mad) for him! We just do albuteral and pulmozyme for breathing - so I'm sure they'll be adding more soon. Anyway *HUG* to you - hang in there! - it's hard when it's our babies!(OK getting mushy - better go! -- Another Dana

 

[MYBOY]

Dana - I can totally relate to you! I cryed when they called and told me Tanner had psuedo and had to go on TOBI - I think he was 7. Then this last year his lung function went down alittle - they started him on azithromycin and pulmozyme. That didn't hit me til the next day on the way to work - so I was a mess at work and of course then you have to explain it to everyone - and cry more! Anyway - yes I know he needs them but I just feel so bad (or mad) for him! We just do albuteral and pulmozyme for breathing - so I'm sure they'll be adding more soon. Anyway *HUG* to you - hang in there! - it's hard when it's our babies!(OK getting mushy - better go! -- Another Dana

 

[MYBOY]

Dana - I can totally relate to you! I cryed when they called and told me Tanner had psuedo and had to go on TOBI - I think he was 7. Then this last year his lung function went down alittle - they started him on azithromycin and pulmozyme. That didn't hit me til the next day on the way to work - so I was a mess at work and of course then you have to explain it to everyone - and cry more! Anyway - yes I know he needs them but I just feel so bad (or mad) for him! We just do albuteral and pulmozyme for breathing - so I'm sure they'll be adding more soon. Anyway *HUG* to you - hang in there! - it's hard when it's our babies!(OK getting mushy - better go! -- Another Dana

 

[Jane]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ktsmom</b></i>

I've got one foot in the hopeful, positive world, but one foot still in the how-can-this-be-happening-to-my-daughter world.

.</end quote></div>

Oh Dana, I think we are all straddling between these worlds. No matter how hard we try to keep a positive attitude, its a day-to-day struggle.

Its ok to feel sad, its normal to be in denial sometimes too. But ou are asking questions and learning more about CF. You are being aggressive with Katy's treatments. You are giving Katy your best and you can feel good about that.

Katy is lucky to have you as her mom!

 

[Jane]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ktsmom</b></i>

I've got one foot in the hopeful, positive world, but one foot still in the how-can-this-be-happening-to-my-daughter world.

.</end quote></div>

Oh Dana, I think we are all straddling between these worlds. No matter how hard we try to keep a positive attitude, its a day-to-day struggle.

Its ok to feel sad, its normal to be in denial sometimes too. But ou are asking questions and learning more about CF. You are being aggressive with Katy's treatments. You are giving Katy your best and you can feel good about that.

Katy is lucky to have you as her mom!

 

[Jane]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ktsmom</b></i>

I've got one foot in the hopeful, positive world, but one foot still in the how-can-this-be-happening-to-my-daughter world.

.</end quote></div>

Oh Dana, I think we are all straddling between these worlds. No matter how hard we try to keep a positive attitude, its a day-to-day struggle.

Its ok to feel sad, its normal to be in denial sometimes too. But ou are asking questions and learning more about CF. You are being aggressive with Katy's treatments. You are giving Katy your best and you can feel good about that.

Katy is lucky to have you as her mom!

 

[debs2girls]

Dana, you know I understand what you are talking about. Like everyone before me said, you are adding years to her life. You are doing great, so dont beat yourself up. You will get used to this added medicine too, just like you have adjusted to everything else.
You can call me anytime you want/need to, I will be delighted to listen to you, be there for you and if you need me to, come and give you a real hug.

 

[debs2girls]

Dana, you know I understand what you are talking about. Like everyone before me said, you are adding years to her life. You are doing great, so dont beat yourself up. You will get used to this added medicine too, just like you have adjusted to everything else.
You can call me anytime you want/need to, I will be delighted to listen to you, be there for you and if you need me to, come and give you a real hug.