READ ME: a challenge to the board

M

monkey

Member
I read this board frequently, but do not post too often. Anyways, I think it would be uplifting to all of us parents to fire up a loooooonngg chain of posts describing POSITIVE experiences as CF parents.

I am not being insensitive to the many who come here to air out their frustrations with CF...I know that it is therapeutic, to some extent, to come hear and cry out how much this illness sucks....scream therapy with a computer keyboard, I guess....

Either way, I think we could all benefit from some positivity, so I will start. Our 6 year old son Ryan, aka the Monkey, has had two sinus surguries over the last 15 months. It was suggested to us that we do daily sinus flushes to keep the junk from accumulating up in his sinuses. This is working wonderfully, and the reason we know that is because each evening, we force a considerable amount of thick snot out of his nose. That sounds bad, but think about it...if we were not doing this process, then all of that hard snot would be compounding up in his sinuses, and we would be scheduling another surgury here in about 6 months, or so. We follow the flush with a shot of Nasonex, and the 'ol Monkey is off to a "comfortable" night of sleep!

Clearly, I am not a physician, but this has been like a miracle for us. If your little one has sinus problems, ask your Doc if daily sinus flushes are recommended (we use NeilMed Sinus Rinse with an 8 oz Nasal Irrigation Bottle). The Monkey hated them at first, but now does them no prob. Even likes it because we play a game to see how much snot he can blow out. Gross, I know, but it's cool.....

I have other positive stories to share later, but I thought I'd get it started.

How about YOU!?!? Will you share a positive story with the rest of the board? We could all use it!

Thanks!

Dan
Father of The Monkey, 5 w/CF & Megan 9 w/o
 
M

monkey

Member
I read this board frequently, but do not post too often. Anyways, I think it would be uplifting to all of us parents to fire up a loooooonngg chain of posts describing POSITIVE experiences as CF parents.

I am not being insensitive to the many who come here to air out their frustrations with CF...I know that it is therapeutic, to some extent, to come hear and cry out how much this illness sucks....scream therapy with a computer keyboard, I guess....

Either way, I think we could all benefit from some positivity, so I will start. Our 6 year old son Ryan, aka the Monkey, has had two sinus surguries over the last 15 months. It was suggested to us that we do daily sinus flushes to keep the junk from accumulating up in his sinuses. This is working wonderfully, and the reason we know that is because each evening, we force a considerable amount of thick snot out of his nose. That sounds bad, but think about it...if we were not doing this process, then all of that hard snot would be compounding up in his sinuses, and we would be scheduling another surgury here in about 6 months, or so. We follow the flush with a shot of Nasonex, and the 'ol Monkey is off to a "comfortable" night of sleep!

Clearly, I am not a physician, but this has been like a miracle for us. If your little one has sinus problems, ask your Doc if daily sinus flushes are recommended (we use NeilMed Sinus Rinse with an 8 oz Nasal Irrigation Bottle). The Monkey hated them at first, but now does them no prob. Even likes it because we play a game to see how much snot he can blow out. Gross, I know, but it's cool.....

I have other positive stories to share later, but I thought I'd get it started.

How about YOU!?!? Will you share a positive story with the rest of the board? We could all use it!

Thanks!

Dan
Father of The Monkey, 5 w/CF & Megan 9 w/o
 
M

monkey

Member
I read this board frequently, but do not post too often. Anyways, I think it would be uplifting to all of us parents to fire up a loooooonngg chain of posts describing POSITIVE experiences as CF parents.

I am not being insensitive to the many who come here to air out their frustrations with CF...I know that it is therapeutic, to some extent, to come hear and cry out how much this illness sucks....scream therapy with a computer keyboard, I guess....

Either way, I think we could all benefit from some positivity, so I will start. Our 6 year old son Ryan, aka the Monkey, has had two sinus surguries over the last 15 months. It was suggested to us that we do daily sinus flushes to keep the junk from accumulating up in his sinuses. This is working wonderfully, and the reason we know that is because each evening, we force a considerable amount of thick snot out of his nose. That sounds bad, but think about it...if we were not doing this process, then all of that hard snot would be compounding up in his sinuses, and we would be scheduling another surgury here in about 6 months, or so. We follow the flush with a shot of Nasonex, and the 'ol Monkey is off to a "comfortable" night of sleep!

Clearly, I am not a physician, but this has been like a miracle for us. If your little one has sinus problems, ask your Doc if daily sinus flushes are recommended (we use NeilMed Sinus Rinse with an 8 oz Nasal Irrigation Bottle). The Monkey hated them at first, but now does them no prob. Even likes it because we play a game to see how much snot he can blow out. Gross, I know, but it's cool.....

I have other positive stories to share later, but I thought I'd get it started.

How about YOU!?!? Will you share a positive story with the rest of the board? We could all use it!

Thanks!

Dan
Father of The Monkey, 5 w/CF & Megan 9 w/o
 
J

Jane

Digital opinion leader
Great idea Dan!

This year has been our most complex in our journey with CF. Because of all the challenges we faced with the boys, we were enlightened as to how committed our medical team really is. It was reassuring to us to see how they were willing to go to extremes to find treatments for the boys' bacteria. Its so important that we trust our doctors and the decisions they make on our behalf. I am so grateful that we were given the opportunity to witness their dedication.
 
J

Jane

Digital opinion leader
Great idea Dan!

This year has been our most complex in our journey with CF. Because of all the challenges we faced with the boys, we were enlightened as to how committed our medical team really is. It was reassuring to us to see how they were willing to go to extremes to find treatments for the boys' bacteria. Its so important that we trust our doctors and the decisions they make on our behalf. I am so grateful that we were given the opportunity to witness their dedication.
 
J

Jane

Digital opinion leader
Great idea Dan!

This year has been our most complex in our journey with CF. Because of all the challenges we faced with the boys, we were enlightened as to how committed our medical team really is. It was reassuring to us to see how they were willing to go to extremes to find treatments for the boys' bacteria. Its so important that we trust our doctors and the decisions they make on our behalf. I am so grateful that we were given the opportunity to witness their dedication.
 
H

hikingmomde

New member
My daughter (18 mos) was diagnosed just over 2 months ago. A couple of days after her diagnosis (while checking out the CFF website) I registered for a Great Strides walk scheduled to take place just about a month later (at the end of Nov). Having no idea what to expect, I asked just a couple of local family members to participate (my parents, my brother and his family). As word spread about my daughter's dx, more and more people asked to participate (both by donating and by walking). As of today, our team has raised over $13,000!
My positive message is that through the adversity of discovering that our daughter has CF, my husband and I realized what an amazing support system we have to be thankful for. Especially during the holiday season, it was unreal to connect with all of these important people in our lives and to witness the love and committment that we are so fortunate to be surrounded by.
Dan, I appreciate the positive thread!
 
H

hikingmomde

New member
My daughter (18 mos) was diagnosed just over 2 months ago. A couple of days after her diagnosis (while checking out the CFF website) I registered for a Great Strides walk scheduled to take place just about a month later (at the end of Nov). Having no idea what to expect, I asked just a couple of local family members to participate (my parents, my brother and his family). As word spread about my daughter's dx, more and more people asked to participate (both by donating and by walking). As of today, our team has raised over $13,000!
My positive message is that through the adversity of discovering that our daughter has CF, my husband and I realized what an amazing support system we have to be thankful for. Especially during the holiday season, it was unreal to connect with all of these important people in our lives and to witness the love and committment that we are so fortunate to be surrounded by.
Dan, I appreciate the positive thread!
 
H

hikingmomde

New member
My daughter (18 mos) was diagnosed just over 2 months ago. A couple of days after her diagnosis (while checking out the CFF website) I registered for a Great Strides walk scheduled to take place just about a month later (at the end of Nov). Having no idea what to expect, I asked just a couple of local family members to participate (my parents, my brother and his family). As word spread about my daughter's dx, more and more people asked to participate (both by donating and by walking). As of today, our team has raised over $13,000!
My positive message is that through the adversity of discovering that our daughter has CF, my husband and I realized what an amazing support system we have to be thankful for. Especially during the holiday season, it was unreal to connect with all of these important people in our lives and to witness the love and committment that we are so fortunate to be surrounded by.
Dan, I appreciate the positive thread!
 
A

anonymous

New member
I am glad someone else noticed the negative things being said. I have a 9 yr. old son with CF and he does amazing. He has only been hospitalized 3 times for his CF. I know it;s hard for us parents, but we need to stay positve for our kids. It is hard when our child has to be hospitalized, but thank God we have the doctors,hospitals,and medicines out there to help our kids! I try not to worry all the time about the future because we need to be happy and show our kids to be positive and take care of themselves. There's so many therapies going through th epipelines and it's so encouraging!! And the best thing we can do for ourselves and our kids is to pray for them!! For their health and future! I don't ask "why" my child and why "us". It was meant to be for our family! I except that and do the best I can for him!! Sure we all go through rough times, but I couldn't get through it with out Jesus in our lives! He looks out for us and our children and is there through our hard times! If I didn't have him I would be angry,worried, and a mess! I do like coming on here and reading forums and when negativety is here and Cf sucks is being used and other things it is depressing to read. I just skip over them! Have a Merry Christmas and good health for all of you and your children!
 
A

anonymous

New member
I am glad someone else noticed the negative things being said. I have a 9 yr. old son with CF and he does amazing. He has only been hospitalized 3 times for his CF. I know it;s hard for us parents, but we need to stay positve for our kids. It is hard when our child has to be hospitalized, but thank God we have the doctors,hospitals,and medicines out there to help our kids! I try not to worry all the time about the future because we need to be happy and show our kids to be positive and take care of themselves. There's so many therapies going through th epipelines and it's so encouraging!! And the best thing we can do for ourselves and our kids is to pray for them!! For their health and future! I don't ask "why" my child and why "us". It was meant to be for our family! I except that and do the best I can for him!! Sure we all go through rough times, but I couldn't get through it with out Jesus in our lives! He looks out for us and our children and is there through our hard times! If I didn't have him I would be angry,worried, and a mess! I do like coming on here and reading forums and when negativety is here and Cf sucks is being used and other things it is depressing to read. I just skip over them! Have a Merry Christmas and good health for all of you and your children!
 
A

anonymous

New member
I am glad someone else noticed the negative things being said. I have a 9 yr. old son with CF and he does amazing. He has only been hospitalized 3 times for his CF. I know it;s hard for us parents, but we need to stay positve for our kids. It is hard when our child has to be hospitalized, but thank God we have the doctors,hospitals,and medicines out there to help our kids! I try not to worry all the time about the future because we need to be happy and show our kids to be positive and take care of themselves. There's so many therapies going through th epipelines and it's so encouraging!! And the best thing we can do for ourselves and our kids is to pray for them!! For their health and future! I don't ask "why" my child and why "us". It was meant to be for our family! I except that and do the best I can for him!! Sure we all go through rough times, but I couldn't get through it with out Jesus in our lives! He looks out for us and our children and is there through our hard times! If I didn't have him I would be angry,worried, and a mess! I do like coming on here and reading forums and when negativety is here and Cf sucks is being used and other things it is depressing to read. I just skip over them! Have a Merry Christmas and good health for all of you and your children!
 
2

2perfectboys

Guest
This board is def lacking positive posts and when someone does they are either blasted with doom will come to them or told that they are bragging. I think that is ashame. I want to hear the good and the bad, but there is a time and place for both. One of the things that made the CF diagnosis easier for me was to hear stories of others that were older and doing so well with CF. I don't kid myself or deny the disease but I can be positive and say that my son is going to live a long and productive life. He is also 9 and still has not had any lung complications, BUT, when the time comes I hopefully can face it with the same positive attitude. They say misery loves company, so I don't know if that is what the problem sometimes is with this board, and maybe I'm just looking at our fairytale life that we have been blessed with so far and think happily ever after thoughts. Bottom line is if something is working for u, great, maybe it doesn't work for all, but share it and hopefully someone can benifit or if something is not working for u, share it and maybe the rest of us can learn. We are all on the same team, and in this race we are running there are more obstacles for some than others but it is my prayer that one day we will all be able to stand at the finish line together to celebrate us wiinning this CF marathon. And for the ones that don't cross the line physically, that their memories never be forgotten and that their spirit is always on our team.
This may all sound a little corney to some, but if u think about it, as different as CF is with every individual, it also makes us so much alike in that we all wanting a treatment or better yet a cure.
 
2

2perfectboys

Guest
This board is def lacking positive posts and when someone does they are either blasted with doom will come to them or told that they are bragging. I think that is ashame. I want to hear the good and the bad, but there is a time and place for both. One of the things that made the CF diagnosis easier for me was to hear stories of others that were older and doing so well with CF. I don't kid myself or deny the disease but I can be positive and say that my son is going to live a long and productive life. He is also 9 and still has not had any lung complications, BUT, when the time comes I hopefully can face it with the same positive attitude. They say misery loves company, so I don't know if that is what the problem sometimes is with this board, and maybe I'm just looking at our fairytale life that we have been blessed with so far and think happily ever after thoughts. Bottom line is if something is working for u, great, maybe it doesn't work for all, but share it and hopefully someone can benifit or if something is not working for u, share it and maybe the rest of us can learn. We are all on the same team, and in this race we are running there are more obstacles for some than others but it is my prayer that one day we will all be able to stand at the finish line together to celebrate us wiinning this CF marathon. And for the ones that don't cross the line physically, that their memories never be forgotten and that their spirit is always on our team.
This may all sound a little corney to some, but if u think about it, as different as CF is with every individual, it also makes us so much alike in that we all wanting a treatment or better yet a cure.
 
2

2perfectboys

Guest
This board is def lacking positive posts and when someone does they are either blasted with doom will come to them or told that they are bragging. I think that is ashame. I want to hear the good and the bad, but there is a time and place for both. One of the things that made the CF diagnosis easier for me was to hear stories of others that were older and doing so well with CF. I don't kid myself or deny the disease but I can be positive and say that my son is going to live a long and productive life. He is also 9 and still has not had any lung complications, BUT, when the time comes I hopefully can face it with the same positive attitude. They say misery loves company, so I don't know if that is what the problem sometimes is with this board, and maybe I'm just looking at our fairytale life that we have been blessed with so far and think happily ever after thoughts. Bottom line is if something is working for u, great, maybe it doesn't work for all, but share it and hopefully someone can benifit or if something is not working for u, share it and maybe the rest of us can learn. We are all on the same team, and in this race we are running there are more obstacles for some than others but it is my prayer that one day we will all be able to stand at the finish line together to celebrate us wiinning this CF marathon. And for the ones that don't cross the line physically, that their memories never be forgotten and that their spirit is always on our team.
This may all sound a little corney to some, but if u think about it, as different as CF is with every individual, it also makes us so much alike in that we all wanting a treatment or better yet a cure.
 
J

JRPandTJP

New member
Great thread...our son is 2 1/2 and full of fire. He hasn't been sick since he was 9 months old and is, in my opinion healthy and vibrant as any other child. He is a true delight and his sister adores him. We work hard to bring nutrition and healthy lifestyle into our lives as a family effort and it helps all of us. We have learned to love life even more since CF entered it. THough we have had to grieve and withstand our share of trauma early on, we've come out the other end with new ideas for how we want to live our lives. I feel more whole and clear about my path in this life and feel better able to allow my children space and resources to find their own. It has shown me life is a wonderful and mysterious journey for us to share with others.

I do feel that each emotion we feel is valid and requires understanding, support and patience to recognize and deal with it. Life is not a constant and covering emotions with pretend positivity can be just as damaging as getting stuck in negativity. You must let life flow through you and respect that which comes. This site helps and so do all of you.
 
J

JRPandTJP

New member
Great thread...our son is 2 1/2 and full of fire. He hasn't been sick since he was 9 months old and is, in my opinion healthy and vibrant as any other child. He is a true delight and his sister adores him. We work hard to bring nutrition and healthy lifestyle into our lives as a family effort and it helps all of us. We have learned to love life even more since CF entered it. THough we have had to grieve and withstand our share of trauma early on, we've come out the other end with new ideas for how we want to live our lives. I feel more whole and clear about my path in this life and feel better able to allow my children space and resources to find their own. It has shown me life is a wonderful and mysterious journey for us to share with others.

I do feel that each emotion we feel is valid and requires understanding, support and patience to recognize and deal with it. Life is not a constant and covering emotions with pretend positivity can be just as damaging as getting stuck in negativity. You must let life flow through you and respect that which comes. This site helps and so do all of you.
 
J

JRPandTJP

New member
Great thread...our son is 2 1/2 and full of fire. He hasn't been sick since he was 9 months old and is, in my opinion healthy and vibrant as any other child. He is a true delight and his sister adores him. We work hard to bring nutrition and healthy lifestyle into our lives as a family effort and it helps all of us. We have learned to love life even more since CF entered it. THough we have had to grieve and withstand our share of trauma early on, we've come out the other end with new ideas for how we want to live our lives. I feel more whole and clear about my path in this life and feel better able to allow my children space and resources to find their own. It has shown me life is a wonderful and mysterious journey for us to share with others.

I do feel that each emotion we feel is valid and requires understanding, support and patience to recognize and deal with it. Life is not a constant and covering emotions with pretend positivity can be just as damaging as getting stuck in negativity. You must let life flow through you and respect that which comes. This site helps and so do all of you.
 
A

anonymous

New member
My 2 1/2yr. old daughter Chelsea has been coughing for 8months. With numerous medication and a trip to hospital, I started to believe that she would cough forever. We even thought she may have to go into hospital for christmas. Last week she Just stopped coughing and her chest sounded soo clear. She hasn't started coughing again and is a vibrant as ever. I am the happiest I have ever been. CF has made us realise that we should make the most of every moment. We always try to be positive because Chelsea is our princess and through everything she is always happy.

Jodie
mum to chelsea 2 1/2 wCF
 
A

anonymous

New member
My 2 1/2yr. old daughter Chelsea has been coughing for 8months. With numerous medication and a trip to hospital, I started to believe that she would cough forever. We even thought she may have to go into hospital for christmas. Last week she Just stopped coughing and her chest sounded soo clear. She hasn't started coughing again and is a vibrant as ever. I am the happiest I have ever been. CF has made us realise that we should make the most of every moment. We always try to be positive because Chelsea is our princess and through everything she is always happy.

Jodie
mum to chelsea 2 1/2 wCF
 
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