Video Day in a life of my son & I shown at NACFC conference - see link

[musclemania70]

I don't know how I initially missed this post the other day but regardless, its a great video Lauren.

I will say that you are to be commended for sharing your story and being brave enough to tell it.
Being public about CF isn't always easy but it is so encouraging to hear other people's stories and hear about their life.
I'm glad you did the video and shared your personal journey with us. (and participated in the trials!!!)

 

[musclemania70]

I don't know how I initially missed this post the other day but regardless, its a great video Lauren.
<br />
<br />I will say that you are to be commended for sharing your story and being brave enough to tell it.
<br />Being public about CF isn't always easy but it is so encouraging to hear other people's stories and hear about their life.
<br />I'm glad you did the video and shared your personal journey with us. (and participated in the trials!!!)

 

[LouLou]

thanks everyone! I wish the video could have been longer so that our whole story could be told. Isaac continues to only show the two mutations. We've repeated his sweat test and although it is a 11 I suspect he has some CFTR misfunction. He hasn't cultured PA or had any other sign or symptom of cf. Perhaps what Amy is remembering that I mentioned behind closed doors our doctor says that he has CRMS but for insurance purposes and for our own peace of mind. We practice preventative care each day (as you saw in the video we do Vest) so that we'll never have any regrets about wishing we'd cared for him more agressively. I don't know where a persons diagnosis actuallly shows up as I only know about diagnosis codes for tests, etc. He is coded for CF and I can only hope that insurance goes through for him for Kalydeco. His doctor has indicated that as soon as it is approved for adults he will be started on it even with no symptoms. As someone mentioned from the NACFC, damage is evident before symptoms present. Isaac has had his share of colds gone lung infections. My hope is that Kalydeco keeps he (and therefore me!) healthier!!

 

[LouLou]

thanks everyone! I wish the video could have been longer so that our whole story could be told. Isaac continues to only show the two mutations. We've repeated his sweat test and although it is a 11 I suspect he has some CFTR misfunction. He hasn't cultured PA or had any other sign or symptom of cf. Perhaps what Amy is remembering that I mentioned behind closed doors our doctor says that he has CRMS but for insurance purposes and for our own peace of mind. We practice preventative care each day (as you saw in the video we do Vest) so that we'll never have any regrets about wishing we'd cared for him more agressively. I don't know where a persons diagnosis actuallly shows up as I only know about diagnosis codes for tests, etc. He is coded for CF and I can only hope that insurance goes through for him for Kalydeco. His doctor has indicated that as soon as it is approved for adults he will be started on it even with no symptoms. As someone mentioned from the NACFC, damage is evident before symptoms present. Isaac has had his share of colds gone lung infections. My hope is that Kalydeco keeps he (and therefore me!) healthier!!

 

[LouLou]

thanks everyone! I wish the video could have been longer so that our whole story could be told. Isaac continues to only show the two mutations. We've repeated his sweat test and although it is a 11 I suspect he has some CFTR misfunction. He hasn't cultured PA or had any other sign or symptom of cf. Perhaps what Amy is remembering that I mentioned behind closed doors our doctor says that he has CRMS but for insurance purposes and for our own peace of mind. We practice preventative care each day (as you saw in the video we do Vest) so that we'll never have any regrets about wishing we'd cared for him more agressively. I don't know where a persons diagnosis actuallly shows up as I only know about diagnosis codes for tests, etc. He is coded for CF and I can only hope that insurance goes through for him for Kalydeco. His doctor has indicated that as soon as it is approved for adults he will be started on it even with no symptoms. As someone mentioned from the NACFC, damage is evident before symptoms present. Isaac has had his share of colds gone lung infections. My hope is that Kalydeco keeps he (and therefore me!) healthier!!

 

[saveferris2009]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>LouLou</b></i> We practice preventative care each day (as you saw in the video we do Vest) so that we'll never have any regrets about wishing we'd cared for him more agressively.</end quote>

<br><br>you are awesome!<br>the best gift my parents ever gave me. every.<br>and of course the best gift you will ever give your son. what a great mom you are!

 

[saveferris2009]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>LouLou</b></i> We practice preventative care each day (as you saw in the video we do Vest) so that we'll never have any regrets about wishing we'd cared for him more agressively.</end quote>

<br><br>you are awesome!<br>the best gift my parents ever gave me. every.<br>and of course the best gift you will ever give your son. what a great mom you are!

 

[saveferris2009]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>LouLou</b></i> We practice preventative care each day (as you saw in the video we do Vest) so that we'll never have any regrets about wishing we'd cared for him more agressively.</end quote>

<br><br>you are awesome!<br>the best gift my parents ever gave me. every.<br>and of course the best gift you will ever give your son. what a great mom you are!

 

[LouLou]

Thanks Amy! I too feel so blessed that my parents made my health such a priority.

We've been doing hand cpt on Isaac since finding out about his cf at 3 months and then I got him a vest at 7 months old. It's the only time he gets to watch tv so he doesn't fight us at all. He's such a good boy. I figure if the cf regimen gives him even half the perserverence, drive and diligence it has given me it wouldn't be such a bad thing

I also enjoy the fact that he is cultured and antibiotic decisions are based on what he actually cultures. I think it would drive me crazy to have a child who had to go through the routine of starting just any antibiotic (doctors best guess) and seeing if it worked. I think I am healthier for this fact. He is started on antiobiotics soon after developing a cough.

 

[LouLou]

Thanks Amy! I too feel so blessed that my parents made my health such a priority.

We've been doing hand cpt on Isaac since finding out about his cf at 3 months and then I got him a vest at 7 months old. It's the only time he gets to watch tv so he doesn't fight us at all. He's such a good boy. I figure if the cf regimen gives him even half the perserverence, drive and diligence it has given me it wouldn't be such a bad thing

I also enjoy the fact that he is cultured and antibiotic decisions are based on what he actually cultures. I think it would drive me crazy to have a child who had to go through the routine of starting just any antibiotic (doctors best guess) and seeing if it worked. I think I am healthier for this fact. He is started on antiobiotics soon after developing a cough.

 

[LouLou]

Thanks Amy! I too feel so blessed that my parents made my health such a priority.

We've been doing hand cpt on Isaac since finding out about his cf at 3 months and then I got him a vest at 7 months old. It's the only time he gets to watch tv so he doesn't fight us at all. He's such a good boy. I figure if the cf regimen gives him even half the perserverence, drive and diligence it has given me it wouldn't be such a bad thing

I also enjoy the fact that he is cultured and antibiotic decisions are based on what he actually cultures. I think it would drive me crazy to have a child who had to go through the routine of starting just any antibiotic (doctors best guess) and seeing if it worked. I think I am healthier for this fact. He is started on antiobiotics soon after developing a cough.