Great Strides Walk

M

Mommafirst

Guest
I didn't bring my daughter last year because, well, I didn't want to push the stroller on the hills. LOL. This year she's just too small to walk it happily and I don't want to carry her. But as she gets older I will definitely bring her.

I wound up walking some of the way last year alongside a teen girl with CF. She was there with a friend or sister. She just had a mask with her -- and used it when she was in the more social elements of the day. Of course she didn't wear it while walking, I'm guessing that would me miserable and hot. She seemed very pleased to be there and I wouldn't want to take that away from my own daughter. I want her to feel connected to other people living with the same crappy stuff she deals with. There is amazing comraderie in that, I'd hate for her to lose out on it. I'll just have to wait until she is old enough to make better hygeine choices.
 
M

Mommafirst

Guest
I didn't bring my daughter last year because, well, I didn't want to push the stroller on the hills. LOL. This year she's just too small to walk it happily and I don't want to carry her. But as she gets older I will definitely bring her.

I wound up walking some of the way last year alongside a teen girl with CF. She was there with a friend or sister. She just had a mask with her -- and used it when she was in the more social elements of the day. Of course she didn't wear it while walking, I'm guessing that would me miserable and hot. She seemed very pleased to be there and I wouldn't want to take that away from my own daughter. I want her to feel connected to other people living with the same crappy stuff she deals with. There is amazing comraderie in that, I'd hate for her to lose out on it. I'll just have to wait until she is old enough to make better hygeine choices.
 
M

Mommafirst

Guest
I didn't bring my daughter last year because, well, I didn't want to push the stroller on the hills. LOL. This year she's just too small to walk it happily and I don't want to carry her. But as she gets older I will definitely bring her.

I wound up walking some of the way last year alongside a teen girl with CF. She was there with a friend or sister. She just had a mask with her -- and used it when she was in the more social elements of the day. Of course she didn't wear it while walking, I'm guessing that would me miserable and hot. She seemed very pleased to be there and I wouldn't want to take that away from my own daughter. I want her to feel connected to other people living with the same crappy stuff she deals with. There is amazing comraderie in that, I'd hate for her to lose out on it. I'll just have to wait until she is old enough to make better hygeine choices.
 
M

Mommafirst

Guest
I didn't bring my daughter last year because, well, I didn't want to push the stroller on the hills. LOL. This year she's just too small to walk it happily and I don't want to carry her. But as she gets older I will definitely bring her.

I wound up walking some of the way last year alongside a teen girl with CF. She was there with a friend or sister. She just had a mask with her -- and used it when she was in the more social elements of the day. Of course she didn't wear it while walking, I'm guessing that would me miserable and hot. She seemed very pleased to be there and I wouldn't want to take that away from my own daughter. I want her to feel connected to other people living with the same crappy stuff she deals with. There is amazing comraderie in that, I'd hate for her to lose out on it. I'll just have to wait until she is old enough to make better hygeine choices.
 
M

Mommafirst

Guest
I didn't bring my daughter last year because, well, I didn't want to push the stroller on the hills. LOL. This year she's just too small to walk it happily and I don't want to carry her. But as she gets older I will definitely bring her.
<br />
<br />I wound up walking some of the way last year alongside a teen girl with CF. She was there with a friend or sister. She just had a mask with her -- and used it when she was in the more social elements of the day. Of course she didn't wear it while walking, I'm guessing that would me miserable and hot. She seemed very pleased to be there and I wouldn't want to take that away from my own daughter. I want her to feel connected to other people living with the same crappy stuff she deals with. There is amazing comraderie in that, I'd hate for her to lose out on it. I'll just have to wait until she is old enough to make better hygeine choices.
 
M

mom4holly

New member
We brought Holly last year & I intend to this year also. Our walk is also at a theme park & we get tickets to stay after the walk so that's our main reason for bringing her---she loved it...it helped her know that there are other children out there like her, there was a little boy there that traveled for the walk just like us & they "vested" together (about 10 ft apart)which Holly thought was the best thing since sliced bread!!!!

Our walk had all of the CFers that were under 10 (give or take, can't remember exactly) wearing what looked like an award/ribbon around thier necks so the parents knew who was who.
 
M

mom4holly

New member
We brought Holly last year & I intend to this year also. Our walk is also at a theme park & we get tickets to stay after the walk so that's our main reason for bringing her---she loved it...it helped her know that there are other children out there like her, there was a little boy there that traveled for the walk just like us & they "vested" together (about 10 ft apart)which Holly thought was the best thing since sliced bread!!!!

Our walk had all of the CFers that were under 10 (give or take, can't remember exactly) wearing what looked like an award/ribbon around thier necks so the parents knew who was who.
 
M

mom4holly

New member
We brought Holly last year & I intend to this year also. Our walk is also at a theme park & we get tickets to stay after the walk so that's our main reason for bringing her---she loved it...it helped her know that there are other children out there like her, there was a little boy there that traveled for the walk just like us & they "vested" together (about 10 ft apart)which Holly thought was the best thing since sliced bread!!!!

Our walk had all of the CFers that were under 10 (give or take, can't remember exactly) wearing what looked like an award/ribbon around thier necks so the parents knew who was who.
 
M

mom4holly

New member
We brought Holly last year & I intend to this year also. Our walk is also at a theme park & we get tickets to stay after the walk so that's our main reason for bringing her---she loved it...it helped her know that there are other children out there like her, there was a little boy there that traveled for the walk just like us & they "vested" together (about 10 ft apart)which Holly thought was the best thing since sliced bread!!!!

Our walk had all of the CFers that were under 10 (give or take, can't remember exactly) wearing what looked like an award/ribbon around thier necks so the parents knew who was who.
 
M

mom4holly

New member
We brought Holly last year & I intend to this year also. Our walk is also at a theme park & we get tickets to stay after the walk so that's our main reason for bringing her---she loved it...it helped her know that there are other children out there like her, there was a little boy there that traveled for the walk just like us & they "vested" together (about 10 ft apart)which Holly thought was the best thing since sliced bread!!!!
<br />
<br />Our walk had all of the CFers that were under 10 (give or take, can't remember exactly) wearing what looked like an award/ribbon around thier necks so the parents knew who was who.
 
T

Terry

Guest
I really appreciate the answers given.

Okay, so I think I already understand the importance of getting to see other children who face the same problems. The B. Cepacia is what scares us the most on Marissa's behalf. I know people who are culturing for it are not allowed to come, but her father's hold back is that since you go 3 months between appointments it is possible to have it and not know it. I guess it is also possible that a plane will fall out of the sky on us. Marissa has only two gears, eiher she is doing really well, or she is crashing. She doesn't just get a little sick.

Our worry on behalf of other CFers is that when she is in the hospital she is not allowed out of her room and everyone that comes in her room has to not only put on masks but gowns and remove them right away when leaving because she is positive for MRSA. She has a nodule in her nose, so she won't keep her fingers out of her nose. My understanding is that is where MRSA lives. How dangerous could she be to another CFer? Would you want her there if you are someone with CF?

I really don't understand why doctors and nurses act like MRSA is the end of the world, and yet she is not being treated for it. Any insight on that? I guess that should be a newtopic...


Thanks for your understanding and input.
 
T

Terry

Guest
I really appreciate the answers given.

Okay, so I think I already understand the importance of getting to see other children who face the same problems. The B. Cepacia is what scares us the most on Marissa's behalf. I know people who are culturing for it are not allowed to come, but her father's hold back is that since you go 3 months between appointments it is possible to have it and not know it. I guess it is also possible that a plane will fall out of the sky on us. Marissa has only two gears, eiher she is doing really well, or she is crashing. She doesn't just get a little sick.

Our worry on behalf of other CFers is that when she is in the hospital she is not allowed out of her room and everyone that comes in her room has to not only put on masks but gowns and remove them right away when leaving because she is positive for MRSA. She has a nodule in her nose, so she won't keep her fingers out of her nose. My understanding is that is where MRSA lives. How dangerous could she be to another CFer? Would you want her there if you are someone with CF?

I really don't understand why doctors and nurses act like MRSA is the end of the world, and yet she is not being treated for it. Any insight on that? I guess that should be a newtopic...


Thanks for your understanding and input.
 
T

Terry

Guest
I really appreciate the answers given.

Okay, so I think I already understand the importance of getting to see other children who face the same problems. The B. Cepacia is what scares us the most on Marissa's behalf. I know people who are culturing for it are not allowed to come, but her father's hold back is that since you go 3 months between appointments it is possible to have it and not know it. I guess it is also possible that a plane will fall out of the sky on us. Marissa has only two gears, eiher she is doing really well, or she is crashing. She doesn't just get a little sick.

Our worry on behalf of other CFers is that when she is in the hospital she is not allowed out of her room and everyone that comes in her room has to not only put on masks but gowns and remove them right away when leaving because she is positive for MRSA. She has a nodule in her nose, so she won't keep her fingers out of her nose. My understanding is that is where MRSA lives. How dangerous could she be to another CFer? Would you want her there if you are someone with CF?

I really don't understand why doctors and nurses act like MRSA is the end of the world, and yet she is not being treated for it. Any insight on that? I guess that should be a newtopic...


Thanks for your understanding and input.
 
T

Terry

Guest
I really appreciate the answers given.

Okay, so I think I already understand the importance of getting to see other children who face the same problems. The B. Cepacia is what scares us the most on Marissa's behalf. I know people who are culturing for it are not allowed to come, but her father's hold back is that since you go 3 months between appointments it is possible to have it and not know it. I guess it is also possible that a plane will fall out of the sky on us. Marissa has only two gears, eiher she is doing really well, or she is crashing. She doesn't just get a little sick.

Our worry on behalf of other CFers is that when she is in the hospital she is not allowed out of her room and everyone that comes in her room has to not only put on masks but gowns and remove them right away when leaving because she is positive for MRSA. She has a nodule in her nose, so she won't keep her fingers out of her nose. My understanding is that is where MRSA lives. How dangerous could she be to another CFer? Would you want her there if you are someone with CF?

I really don't understand why doctors and nurses act like MRSA is the end of the world, and yet she is not being treated for it. Any insight on that? I guess that should be a newtopic...


Thanks for your understanding and input.
 
T

Terry

Guest
I really appreciate the answers given.
<br />
<br />Okay, so I think I already understand the importance of getting to see other children who face the same problems. The B. Cepacia is what scares us the most on Marissa's behalf. I know people who are culturing for it are not allowed to come, but her father's hold back is that since you go 3 months between appointments it is possible to have it and not know it. I guess it is also possible that a plane will fall out of the sky on us. Marissa has only two gears, eiher she is doing really well, or she is crashing. She doesn't just get a little sick.
<br />
<br />Our worry on behalf of other CFers is that when she is in the hospital she is not allowed out of her room and everyone that comes in her room has to not only put on masks but gowns and remove them right away when leaving because she is positive for MRSA. She has a nodule in her nose, so she won't keep her fingers out of her nose. My understanding is that is where MRSA lives. How dangerous could she be to another CFer? Would you want her there if you are someone with CF?
<br />
<br />I really don't understand why doctors and nurses act like MRSA is the end of the world, and yet she is not being treated for it. Any insight on that? I guess that should be a newtopic...
<br />
<br />
<br />Thanks for your understanding and input.
<br />
<br />
<br />
<br />
 
C

Cherylwithone

Guest
Terry, I am new to this site. I have a 15 year old daughter with CF and other problems they say are not caused by the CF. She has been in the hopital 3 times this year. She hates it everytime because of the gowns and mask and gloves. She did get mad one time and asked them why they don't just put all CF kids in a bubble for display. I think after awhile they just get tired. They say no sleepovers. No gathering in hospital halls to say hi to people you know. When your there all the time you can'thelp but make friends. I think if Malora could be face to face with another CF child she could see they feel just the same way that she does. Malora never just gets sick. She also does the crash and burn. We can be in to see one doctor one day and the next day see a different one and be admitted. That is how fast her body can crash. Any thoughts on how you deal with this?

Cheryl, Malora 15yo wCF
 
C

Cherylwithone

Guest
Terry, I am new to this site. I have a 15 year old daughter with CF and other problems they say are not caused by the CF. She has been in the hopital 3 times this year. She hates it everytime because of the gowns and mask and gloves. She did get mad one time and asked them why they don't just put all CF kids in a bubble for display. I think after awhile they just get tired. They say no sleepovers. No gathering in hospital halls to say hi to people you know. When your there all the time you can'thelp but make friends. I think if Malora could be face to face with another CF child she could see they feel just the same way that she does. Malora never just gets sick. She also does the crash and burn. We can be in to see one doctor one day and the next day see a different one and be admitted. That is how fast her body can crash. Any thoughts on how you deal with this?

Cheryl, Malora 15yo wCF
 
C

Cherylwithone

Guest
Terry, I am new to this site. I have a 15 year old daughter with CF and other problems they say are not caused by the CF. She has been in the hopital 3 times this year. She hates it everytime because of the gowns and mask and gloves. She did get mad one time and asked them why they don't just put all CF kids in a bubble for display. I think after awhile they just get tired. They say no sleepovers. No gathering in hospital halls to say hi to people you know. When your there all the time you can'thelp but make friends. I think if Malora could be face to face with another CF child she could see they feel just the same way that she does. Malora never just gets sick. She also does the crash and burn. We can be in to see one doctor one day and the next day see a different one and be admitted. That is how fast her body can crash. Any thoughts on how you deal with this?

Cheryl, Malora 15yo wCF
 
C

Cherylwithone

Guest
Terry, I am new to this site. I have a 15 year old daughter with CF and other problems they say are not caused by the CF. She has been in the hopital 3 times this year. She hates it everytime because of the gowns and mask and gloves. She did get mad one time and asked them why they don't just put all CF kids in a bubble for display. I think after awhile they just get tired. They say no sleepovers. No gathering in hospital halls to say hi to people you know. When your there all the time you can'thelp but make friends. I think if Malora could be face to face with another CF child she could see they feel just the same way that she does. Malora never just gets sick. She also does the crash and burn. We can be in to see one doctor one day and the next day see a different one and be admitted. That is how fast her body can crash. Any thoughts on how you deal with this?

Cheryl, Malora 15yo wCF
 
C

Cherylwithone

Guest
Terry, I am new to this site. I have a 15 year old daughter with CF and other problems they say are not caused by the CF. She has been in the hopital 3 times this year. She hates it everytime because of the gowns and mask and gloves. She did get mad one time and asked them why they don't just put all CF kids in a bubble for display. I think after awhile they just get tired. They say no sleepovers. No gathering in hospital halls to say hi to people you know. When your there all the time you can'thelp but make friends. I think if Malora could be face to face with another CF child she could see they feel just the same way that she does. Malora never just gets sick. She also does the crash and burn. We can be in to see one doctor one day and the next day see a different one and be admitted. That is how fast her body can crash. Any thoughts on how you deal with this?
<br />
<br />Cheryl, Malora 15yo wCF
 
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