new to this forum---many questions

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Cherylwithone

Guest
Just me again...Malora also has a button. For the longest time she wore baggy shirts and would'nt put on a bathing suite. Well, This summer she has me buy her a bikini. I asked her about the button and ace showing. She said it was other peoples problem and not hers. You will be caught off guard when all of a sudden they take the bull by the horn (so to speak) and just go on with being a kid.

It does have to be in their owen time and not ours. Malora was relieved to tell her class. She thought they would feel sorry for her and that was'nt the case. They just wanted to learn more about CF and what they can do to help. They understand why she is so small and why sometimes it is harder to do things when she is'nt feeling well. Oh yeah and they will learn to wheel and deal with their doctors. Malora got real sick in December. A semi formal was coming. She had the dress, shoes, everything and boom she couldn't go. Her doctor was worried with the heat in the room and everything that she would pass out. Malora told him no problem her best friends father would be there and he would pick her, put her on the curb and call me to come get her. She ended up in the hospital and with another PICC line. You had to give her credit for trying.

You can always PM me or email me clrogers@norwoodlight.com

Cheryl mom to Malora 15 w/cf
 
C

Cherylwithone

Guest
Just me again...Malora also has a button. For the longest time she wore baggy shirts and would'nt put on a bathing suite. Well, This summer she has me buy her a bikini. I asked her about the button and ace showing. She said it was other peoples problem and not hers. You will be caught off guard when all of a sudden they take the bull by the horn (so to speak) and just go on with being a kid.

It does have to be in their owen time and not ours. Malora was relieved to tell her class. She thought they would feel sorry for her and that was'nt the case. They just wanted to learn more about CF and what they can do to help. They understand why she is so small and why sometimes it is harder to do things when she is'nt feeling well. Oh yeah and they will learn to wheel and deal with their doctors. Malora got real sick in December. A semi formal was coming. She had the dress, shoes, everything and boom she couldn't go. Her doctor was worried with the heat in the room and everything that she would pass out. Malora told him no problem her best friends father would be there and he would pick her, put her on the curb and call me to come get her. She ended up in the hospital and with another PICC line. You had to give her credit for trying.

You can always PM me or email me clrogers@norwoodlight.com

Cheryl mom to Malora 15 w/cf
 
C

Cherylwithone

Guest
Just me again...Malora also has a button. For the longest time she wore baggy shirts and would'nt put on a bathing suite. Well, This summer she has me buy her a bikini. I asked her about the button and ace showing. She said it was other peoples problem and not hers. You will be caught off guard when all of a sudden they take the bull by the horn (so to speak) and just go on with being a kid.

It does have to be in their owen time and not ours. Malora was relieved to tell her class. She thought they would feel sorry for her and that was'nt the case. They just wanted to learn more about CF and what they can do to help. They understand why she is so small and why sometimes it is harder to do things when she is'nt feeling well. Oh yeah and they will learn to wheel and deal with their doctors. Malora got real sick in December. A semi formal was coming. She had the dress, shoes, everything and boom she couldn't go. Her doctor was worried with the heat in the room and everything that she would pass out. Malora told him no problem her best friends father would be there and he would pick her, put her on the curb and call me to come get her. She ended up in the hospital and with another PICC line. You had to give her credit for trying.

You can always PM me or email me clrogers@norwoodlight.com

Cheryl mom to Malora 15 w/cf
 
C

Cherylwithone

Guest
Just me again...Malora also has a button. For the longest time she wore baggy shirts and would'nt put on a bathing suite. Well, This summer she has me buy her a bikini. I asked her about the button and ace showing. She said it was other peoples problem and not hers. You will be caught off guard when all of a sudden they take the bull by the horn (so to speak) and just go on with being a kid.

It does have to be in their owen time and not ours. Malora was relieved to tell her class. She thought they would feel sorry for her and that was'nt the case. They just wanted to learn more about CF and what they can do to help. They understand why she is so small and why sometimes it is harder to do things when she is'nt feeling well. Oh yeah and they will learn to wheel and deal with their doctors. Malora got real sick in December. A semi formal was coming. She had the dress, shoes, everything and boom she couldn't go. Her doctor was worried with the heat in the room and everything that she would pass out. Malora told him no problem her best friends father would be there and he would pick her, put her on the curb and call me to come get her. She ended up in the hospital and with another PICC line. You had to give her credit for trying.

You can always PM me or email me clrogers@norwoodlight.com

Cheryl mom to Malora 15 w/cf
 
C

Cherylwithone

Guest
Just me again...Malora also has a button. For the longest time she wore baggy shirts and would'nt put on a bathing suite. Well, This summer she has me buy her a bikini. I asked her about the button and ace showing. She said it was other peoples problem and not hers. You will be caught off guard when all of a sudden they take the bull by the horn (so to speak) and just go on with being a kid.
<br />
<br />It does have to be in their owen time and not ours. Malora was relieved to tell her class. She thought they would feel sorry for her and that was'nt the case. They just wanted to learn more about CF and what they can do to help. They understand why she is so small and why sometimes it is harder to do things when she is'nt feeling well. Oh yeah and they will learn to wheel and deal with their doctors. Malora got real sick in December. A semi formal was coming. She had the dress, shoes, everything and boom she couldn't go. Her doctor was worried with the heat in the room and everything that she would pass out. Malora told him no problem her best friends father would be there and he would pick her, put her on the curb and call me to come get her. She ended up in the hospital and with another PICC line. You had to give her credit for trying.
<br />
<br />You can always PM me or email me clrogers@norwoodlight.com
<br />
<br />Cheryl mom to Malora 15 w/cf
 
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tammykrumrey

Guest
Welcome! My daughters both have CF, but are a little younger than your daughter. They go to a small private school, and everyone knows that they have CF. My girls do not care that everyone knows b/c they don't feel like CF makes them who they are. They know many other kids with other medical problems and they just act like it's no big deal if people know.

They see me talk in front of a lot of people during CF fund raisers and as long as they don't have to get up and talk in front of the people, they are ok with what ever I need to say<img src="i/expressions/face-icon-small-smile.gif" border="0">

I look forward to getting to see more of you on this site. It is great to have all these people to help you not feel so alone!
 
T

tammykrumrey

Guest
Welcome! My daughters both have CF, but are a little younger than your daughter. They go to a small private school, and everyone knows that they have CF. My girls do not care that everyone knows b/c they don't feel like CF makes them who they are. They know many other kids with other medical problems and they just act like it's no big deal if people know.

They see me talk in front of a lot of people during CF fund raisers and as long as they don't have to get up and talk in front of the people, they are ok with what ever I need to say<img src="i/expressions/face-icon-small-smile.gif" border="0">

I look forward to getting to see more of you on this site. It is great to have all these people to help you not feel so alone!
 
T

tammykrumrey

Guest
Welcome! My daughters both have CF, but are a little younger than your daughter. They go to a small private school, and everyone knows that they have CF. My girls do not care that everyone knows b/c they don't feel like CF makes them who they are. They know many other kids with other medical problems and they just act like it's no big deal if people know.

They see me talk in front of a lot of people during CF fund raisers and as long as they don't have to get up and talk in front of the people, they are ok with what ever I need to say<img src="i/expressions/face-icon-small-smile.gif" border="0">

I look forward to getting to see more of you on this site. It is great to have all these people to help you not feel so alone!
 
T

tammykrumrey

Guest
Welcome! My daughters both have CF, but are a little younger than your daughter. They go to a small private school, and everyone knows that they have CF. My girls do not care that everyone knows b/c they don't feel like CF makes them who they are. They know many other kids with other medical problems and they just act like it's no big deal if people know.

They see me talk in front of a lot of people during CF fund raisers and as long as they don't have to get up and talk in front of the people, they are ok with what ever I need to say<img src="i/expressions/face-icon-small-smile.gif" border="0">

I look forward to getting to see more of you on this site. It is great to have all these people to help you not feel so alone!
 
T

tammykrumrey

Guest
Welcome! My daughters both have CF, but are a little younger than your daughter. They go to a small private school, and everyone knows that they have CF. My girls do not care that everyone knows b/c they don't feel like CF makes them who they are. They know many other kids with other medical problems and they just act like it's no big deal if people know.
<br />
<br />They see me talk in front of a lot of people during CF fund raisers and as long as they don't have to get up and talk in front of the people, they are ok with what ever I need to say<img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />
<br />I look forward to getting to see more of you on this site. It is great to have all these people to help you not feel so alone!
<br />
 
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