creation301
New member
You are the only ones in the world that can possibly understand how tired and worn out we get from this amazing fight of cf. I have a child of 4 with cf. We have had a really crummy last 6 months. The last round has been non-stop since Jan. with two almost hospitalizations- (but praise the Lord we are still home, I know many haven't been that lucky, so that is sad to me too).
First my question. How many of you do 4 or more treatments a day? Our last visit fev1 was 80%. Doctor wanted her to increase treatments to 4 a day/ more of course since she has been so sick. We have four kids and it seems like all we do all day is treatments, and push food (she lost 4 pounds through the last sickness-arggg). We are exhausted and don't see it getting any better anytime soon. She sounds better now, but the knowledge there will be many, many more days like this ahead is heartbreaking. It is so hard to watch your child struggle for breath, and yet not knowing life as any different, there is still the sweet weary smile on the face that keeps going. We are finishing up a round of tobi, but I still hear the congestion. Of course we also have major allergies, so with spring coming...I feel like we are going to just get hit again.
So do amounts of treatments really make a difference? Most of the treatments we have to make her cough, and it is a forced cough.
Second question, like I said before it seems like we have been hit really hard this winter (may have had an exposure to h1n1) AND we don't even go anywhere!!!!! I homeschool (we were doing it before cf), stay away from every place I think there might be germs and wash and purell CONSTANTLY!! So frustrated. I hear of older cfer's that live life and I constantly feel like I am having to find the balance between letting her live life and somewhat feeling like it is at the risk of a shorter life. Does anyone ever feel like that?
I try really hard to find a balance between the two, and yet, I feel like we are still failing right now. Somedays I think maybe I should just let her be a kid and not freak out when she plays in the dirt, or puts her mouth somewhere that could have germs, or swim in a lake. BUT...then I get discouraged and think she has had a rough road already. Maybe she isn't one of those people that will have a decent run with this disease (almost scoffing when I think of what is decent with cf-25,35,40??) I hate stats, because they just don't tell the whole story of the struggle or the differences between people.
I read the stories on here of people and I am encouraged and very saddened at the same time. I mean we've only been at this for a little under 5 years and it has rocked our world. I hear people say that they don't let cf control their lives. HOW???? We are at her machine, 8, noon, 4, and 8 everyday! How does that not affect you? If any of you have any ideas please let me know. We do use the time to try to enjoy being together, read, color, but still...as you all know too well...it is still hard. I wouldn't trade this life with our precious gift from the Lord, it is and has sure taught me a lot of great lessons, but still. I wish it were different. It is one of those days. Like we say at our house, we cry, fuss, pray, wish, and whine and then we suck it up and do what we have to do. Today I am not quite there.
Sorry for the long post, this has just been a long few months of sickness, isolation, and worry, and work. Thanks for listening and being here. I am so thankful that we have a place like this. God knew we needed it.
First my question. How many of you do 4 or more treatments a day? Our last visit fev1 was 80%. Doctor wanted her to increase treatments to 4 a day/ more of course since she has been so sick. We have four kids and it seems like all we do all day is treatments, and push food (she lost 4 pounds through the last sickness-arggg). We are exhausted and don't see it getting any better anytime soon. She sounds better now, but the knowledge there will be many, many more days like this ahead is heartbreaking. It is so hard to watch your child struggle for breath, and yet not knowing life as any different, there is still the sweet weary smile on the face that keeps going. We are finishing up a round of tobi, but I still hear the congestion. Of course we also have major allergies, so with spring coming...I feel like we are going to just get hit again.
So do amounts of treatments really make a difference? Most of the treatments we have to make her cough, and it is a forced cough.
Second question, like I said before it seems like we have been hit really hard this winter (may have had an exposure to h1n1) AND we don't even go anywhere!!!!! I homeschool (we were doing it before cf), stay away from every place I think there might be germs and wash and purell CONSTANTLY!! So frustrated. I hear of older cfer's that live life and I constantly feel like I am having to find the balance between letting her live life and somewhat feeling like it is at the risk of a shorter life. Does anyone ever feel like that?
I try really hard to find a balance between the two, and yet, I feel like we are still failing right now. Somedays I think maybe I should just let her be a kid and not freak out when she plays in the dirt, or puts her mouth somewhere that could have germs, or swim in a lake. BUT...then I get discouraged and think she has had a rough road already. Maybe she isn't one of those people that will have a decent run with this disease (almost scoffing when I think of what is decent with cf-25,35,40??) I hate stats, because they just don't tell the whole story of the struggle or the differences between people.
I read the stories on here of people and I am encouraged and very saddened at the same time. I mean we've only been at this for a little under 5 years and it has rocked our world. I hear people say that they don't let cf control their lives. HOW???? We are at her machine, 8, noon, 4, and 8 everyday! How does that not affect you? If any of you have any ideas please let me know. We do use the time to try to enjoy being together, read, color, but still...as you all know too well...it is still hard. I wouldn't trade this life with our precious gift from the Lord, it is and has sure taught me a lot of great lessons, but still. I wish it were different. It is one of those days. Like we say at our house, we cry, fuss, pray, wish, and whine and then we suck it up and do what we have to do. Today I am not quite there.
Sorry for the long post, this has just been a long few months of sickness, isolation, and worry, and work. Thanks for listening and being here. I am so thankful that we have a place like this. God knew we needed it.