You've gotten some wonderful advice already. First off your daughter is just beautiful. From personal experience, nothing with CF seems to stay the same. For a control freak like me, it's hard. One doc once said to me "Knowledge is power" It's so true. Educating myself about CF has helped as well as knowing CF IS so individual that what may work for one CF'er may not necessarily work for another. My daughter who is 4 with CF had a very tough time respiratory wise at the age of 2 1/2 as well. It's hard when they can't verbalize exactly how they feel , too. As mom you know your child best. I felt at the time, when my daughter was having a tough time , that the docs maybe weren't listening or I wasn't being clear enough. We ended up getting a second opinion, with aggressive treatment, PICC line ,IV, bronch she improved, and hasn't been admitted to the hospital since. Maggie has a health care routine we've stuck to since that hospitalization. We've had some med adjustments, tried new things but our airway clearance routine and most meds are the same. We do not skip treatments and try our best to nip stuff in the bud. Coming to this site has helped as poeple understand what we feel. I've found very few people truly understand what it's like, because how could they unless they too have a child with CF?
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Can I really handle all of this?
- Thread starter marymomofallissa
- Start date
You've gotten some wonderful advice already. First off your daughter is just beautiful. From personal experience, nothing with CF seems to stay the same. For a control freak like me, it's hard. One doc once said to me "Knowledge is power" It's so true. Educating myself about CF has helped as well as knowing CF IS so individual that what may work for one CF'er may not necessarily work for another. My daughter who is 4 with CF had a very tough time respiratory wise at the age of 2 1/2 as well. It's hard when they can't verbalize exactly how they feel , too. As mom you know your child best. I felt at the time, when my daughter was having a tough time , that the docs maybe weren't listening or I wasn't being clear enough. We ended up getting a second opinion, with aggressive treatment, PICC line ,IV, bronch she improved, and hasn't been admitted to the hospital since. Maggie has a health care routine we've stuck to since that hospitalization. We've had some med adjustments, tried new things but our airway clearance routine and most meds are the same. We do not skip treatments and try our best to nip stuff in the bud. Coming to this site has helped as poeple understand what we feel. I've found very few people truly understand what it's like, because how could they unless they too have a child with CF?
marymomofallissa
New member
Wow, thank you all for such a warm response. You are all such a comfort even now I hear Allissa playing with her brother, she starts coughing, I struggle with the need for intervention or not and then silence, and the cutest little girly giggle and I am able to take a deep breathe. In my enormous fears and endless anxiety I stop and look at one thing my baby girl and my beautiful boy, for them my husband and I are strong so even if I am crumbling apart inside I still personify a strong level headed cool as a cucumber mom. I am so grateful that I have found this site and outlet so that on nights like last night I will have a place where I know I can fall apart and others will understand, it will be ok and I can read your helpful comments and put myself all back together again, tank you.<img src="i/expressions/present.gif" border="0">
~*~Thank you Foody for such great advice it really does help~*~
~*~Thank you Foody for such great advice it really does help~*~
marymomofallissa
New member
Wow, thank you all for such a warm response. You are all such a comfort even now I hear Allissa playing with her brother, she starts coughing, I struggle with the need for intervention or not and then silence, and the cutest little girly giggle and I am able to take a deep breathe. In my enormous fears and endless anxiety I stop and look at one thing my baby girl and my beautiful boy, for them my husband and I are strong so even if I am crumbling apart inside I still personify a strong level headed cool as a cucumber mom. I am so grateful that I have found this site and outlet so that on nights like last night I will have a place where I know I can fall apart and others will understand, it will be ok and I can read your helpful comments and put myself all back together again, tank you.<img src="i/expressions/present.gif" border="0">
~*~Thank you Foody for such great advice it really does help~*~
~*~Thank you Foody for such great advice it really does help~*~
marymomofallissa
New member
Wow, thank you all for such a warm response. You are all such a comfort even now I hear Allissa playing with her brother, she starts coughing, I struggle with the need for intervention or not and then silence, and the cutest little girly giggle and I am able to take a deep breathe. In my enormous fears and endless anxiety I stop and look at one thing my baby girl and my beautiful boy, for them my husband and I are strong so even if I am crumbling apart inside I still personify a strong level headed cool as a cucumber mom. I am so grateful that I have found this site and outlet so that on nights like last night I will have a place where I know I can fall apart and others will understand, it will be ok and I can read your helpful comments and put myself all back together again, tank you.<img src="i/expressions/present.gif" border="0">
~*~Thank you Foody for such great advice it really does help~*~
~*~Thank you Foody for such great advice it really does help~*~
This board has helped me out so many times. I have been having somewhat of a low spell lately because Erin was sick back to back. I usually come to the boards with specific health questions/commments & that helps me out. Your thread really described how a lot of others feel...including me. I have a hard time explaining how I feel inside about CF, but your post was right on. It is so hard to explain sometimes all the feelings that go on when your little one coughs. Thanks for your post and all of the responses. It is nice to know you are not alone. And by you finding out you are not alone, it has reminded me that I am not!
This board has helped me out so many times. I have been having somewhat of a low spell lately because Erin was sick back to back. I usually come to the boards with specific health questions/commments & that helps me out. Your thread really described how a lot of others feel...including me. I have a hard time explaining how I feel inside about CF, but your post was right on. It is so hard to explain sometimes all the feelings that go on when your little one coughs. Thanks for your post and all of the responses. It is nice to know you are not alone. And by you finding out you are not alone, it has reminded me that I am not!
This board has helped me out so many times. I have been having somewhat of a low spell lately because Erin was sick back to back. I usually come to the boards with specific health questions/commments & that helps me out. Your thread really described how a lot of others feel...including me. I have a hard time explaining how I feel inside about CF, but your post was right on. It is so hard to explain sometimes all the feelings that go on when your little one coughs. Thanks for your post and all of the responses. It is nice to know you are not alone. And by you finding out you are not alone, it has reminded me that I am not!
marymomofallissa
New member
Hi everyone! Thank youall again for such amazing support. Karon thank you for letting me know that everything I am going thru is "normal" It is good to know that I have this resource it is a big comfort! thank you all so much!
marymomofallissa
New member
Hi everyone! Thank youall again for such amazing support. Karon thank you for letting me know that everything I am going thru is "normal" It is good to know that I have this resource it is a big comfort! thank you all so much!
marymomofallissa
New member
Hi everyone! Thank youall again for such amazing support. Karon thank you for letting me know that everything I am going thru is "normal" It is good to know that I have this resource it is a big comfort! thank you all so much!
It seems I'm a little late in responding and don't really have more to add.
You so eloquently shared your frustration and it really touched my heart. We have all felt like this and understand your pain. Please keep writing. It IS such a comfort to know others hear you.
I wish I had this site when my sons were diagnosed.
You so eloquently shared your frustration and it really touched my heart. We have all felt like this and understand your pain. Please keep writing. It IS such a comfort to know others hear you.
I wish I had this site when my sons were diagnosed.
It seems I'm a little late in responding and don't really have more to add.
You so eloquently shared your frustration and it really touched my heart. We have all felt like this and understand your pain. Please keep writing. It IS such a comfort to know others hear you.
I wish I had this site when my sons were diagnosed.
You so eloquently shared your frustration and it really touched my heart. We have all felt like this and understand your pain. Please keep writing. It IS such a comfort to know others hear you.
I wish I had this site when my sons were diagnosed.
It seems I'm a little late in responding and don't really have more to add.
You so eloquently shared your frustration and it really touched my heart. We have all felt like this and understand your pain. Please keep writing. It IS such a comfort to know others hear you.
I wish I had this site when my sons were diagnosed.
You so eloquently shared your frustration and it really touched my heart. We have all felt like this and understand your pain. Please keep writing. It IS such a comfort to know others hear you.
I wish I had this site when my sons were diagnosed.