Pen Pals for CF Kids?

[Cherylwithone]

Terry, My daughter is now 15. Just turned it last month. She knows the out come of CF. In fact she new this 3 years ago. Her best friend asked her if she was going to die. Malora's answer was simple. Everybody dies and she has no plans to die soon and that infact she will live a long life if she has it her way. I think her knowing gives her the power to deal with the good and bad news. She has been in the hospital 3 times this year. Has had 2 PICC lines places and now has her heart being monitored for tachycardic. Her weight dropped so fast that they put her on 3500 calories aday to get her weight up. Not only was she doing PN by PICC but was using her MI-Key and eating on top of all that. She wants to prove them wrong about living and dieing with CF. My daughter talks to another little girl in another country with CF. They share what is going on in their lives. It does help to talk with someone going through the exact same thing. You can ask them things that someone else just would'nt understand. It's hard. You will know the time to tell because your child will tell you.

Cheryl, daughter Malora 15 with CF one son 21 non CF

 

[Cherylwithone]

Terry, My daughter is now 15. Just turned it last month. She knows the out come of CF. In fact she new this 3 years ago. Her best friend asked her if she was going to die. Malora's answer was simple. Everybody dies and she has no plans to die soon and that infact she will live a long life if she has it her way. I think her knowing gives her the power to deal with the good and bad news. She has been in the hospital 3 times this year. Has had 2 PICC lines places and now has her heart being monitored for tachycardic. Her weight dropped so fast that they put her on 3500 calories aday to get her weight up. Not only was she doing PN by PICC but was using her MI-Key and eating on top of all that. She wants to prove them wrong about living and dieing with CF. My daughter talks to another little girl in another country with CF. They share what is going on in their lives. It does help to talk with someone going through the exact same thing. You can ask them things that someone else just would'nt understand. It's hard. You will know the time to tell because your child will tell you.

Cheryl, daughter Malora 15 with CF one son 21 non CF

 

[Cherylwithone]

Terry, My daughter is now 15. Just turned it last month. She knows the out come of CF. In fact she new this 3 years ago. Her best friend asked her if she was going to die. Malora's answer was simple. Everybody dies and she has no plans to die soon and that infact she will live a long life if she has it her way. I think her knowing gives her the power to deal with the good and bad news. She has been in the hospital 3 times this year. Has had 2 PICC lines places and now has her heart being monitored for tachycardic. Her weight dropped so fast that they put her on 3500 calories aday to get her weight up. Not only was she doing PN by PICC but was using her MI-Key and eating on top of all that. She wants to prove them wrong about living and dieing with CF. My daughter talks to another little girl in another country with CF. They share what is going on in their lives. It does help to talk with someone going through the exact same thing. You can ask them things that someone else just would'nt understand. It's hard. You will know the time to tell because your child will tell you.

Cheryl, daughter Malora 15 with CF one son 21 non CF

 

[Cherylwithone]

Terry, My daughter is now 15. Just turned it last month. She knows the out come of CF. In fact she new this 3 years ago. Her best friend asked her if she was going to die. Malora's answer was simple. Everybody dies and she has no plans to die soon and that infact she will live a long life if she has it her way. I think her knowing gives her the power to deal with the good and bad news. She has been in the hospital 3 times this year. Has had 2 PICC lines places and now has her heart being monitored for tachycardic. Her weight dropped so fast that they put her on 3500 calories aday to get her weight up. Not only was she doing PN by PICC but was using her MI-Key and eating on top of all that. She wants to prove them wrong about living and dieing with CF. My daughter talks to another little girl in another country with CF. They share what is going on in their lives. It does help to talk with someone going through the exact same thing. You can ask them things that someone else just would'nt understand. It's hard. You will know the time to tell because your child will tell you.

Cheryl, daughter Malora 15 with CF one son 21 non CF

 

[Cherylwithone]

Terry, My daughter is now 15. Just turned it last month. She knows the out come of CF. In fact she new this 3 years ago. Her best friend asked her if she was going to die. Malora's answer was simple. Everybody dies and she has no plans to die soon and that infact she will live a long life if she has it her way. I think her knowing gives her the power to deal with the good and bad news. She has been in the hospital 3 times this year. Has had 2 PICC lines places and now has her heart being monitored for tachycardic. Her weight dropped so fast that they put her on 3500 calories aday to get her weight up. Not only was she doing PN by PICC but was using her MI-Key and eating on top of all that. She wants to prove them wrong about living and dieing with CF. My daughter talks to another little girl in another country with CF. They share what is going on in their lives. It does help to talk with someone going through the exact same thing. You can ask them things that someone else just would'nt understand. It's hard. You will know the time to tell because your child will tell you.
<br />
<br />Cheryl, daughter Malora 15 with CF one son 21 non CF

 

[Pumpkinnut3]

When Ali was 6-7 (turned 7 in July and died in August) She started lying to us about how she was feeling..I had to do the same thing with her peak flow or i'd take her temp daily. She knew that if she was sick again she would be in the hospital but didnt quite understand WHY she needed to be in the hospital.
If Marissa has never been admitted before now would probably be a good time to start explaining to her that the day will come when she'll need to be admitted, and maybe tell her a little about what will happen..Or ask her CF doc at her next appt to go over it with her. Unfortunalty my daughter grew up constantly in and out of hospitals so it wasn't so much a fear of going in but more of a hassle to her.

 

[Pumpkinnut3]

When Ali was 6-7 (turned 7 in July and died in August) She started lying to us about how she was feeling..I had to do the same thing with her peak flow or i'd take her temp daily. She knew that if she was sick again she would be in the hospital but didnt quite understand WHY she needed to be in the hospital.
If Marissa has never been admitted before now would probably be a good time to start explaining to her that the day will come when she'll need to be admitted, and maybe tell her a little about what will happen..Or ask her CF doc at her next appt to go over it with her. Unfortunalty my daughter grew up constantly in and out of hospitals so it wasn't so much a fear of going in but more of a hassle to her.

 

[Pumpkinnut3]

When Ali was 6-7 (turned 7 in July and died in August) She started lying to us about how she was feeling..I had to do the same thing with her peak flow or i'd take her temp daily. She knew that if she was sick again she would be in the hospital but didnt quite understand WHY she needed to be in the hospital.
If Marissa has never been admitted before now would probably be a good time to start explaining to her that the day will come when she'll need to be admitted, and maybe tell her a little about what will happen..Or ask her CF doc at her next appt to go over it with her. Unfortunalty my daughter grew up constantly in and out of hospitals so it wasn't so much a fear of going in but more of a hassle to her.

 

[Pumpkinnut3]

When Ali was 6-7 (turned 7 in July and died in August) She started lying to us about how she was feeling..I had to do the same thing with her peak flow or i'd take her temp daily. She knew that if she was sick again she would be in the hospital but didnt quite understand WHY she needed to be in the hospital.
If Marissa has never been admitted before now would probably be a good time to start explaining to her that the day will come when she'll need to be admitted, and maybe tell her a little about what will happen..Or ask her CF doc at her next appt to go over it with her. Unfortunalty my daughter grew up constantly in and out of hospitals so it wasn't so much a fear of going in but more of a hassle to her.

 

[Pumpkinnut3]

When Ali was 6-7 (turned 7 in July and died in August) She started lying to us about how she was feeling..I had to do the same thing with her peak flow or i'd take her temp daily. She knew that if she was sick again she would be in the hospital but didnt quite understand WHY she needed to be in the hospital.
<br />If Marissa has never been admitted before now would probably be a good time to start explaining to her that the day will come when she'll need to be admitted, and maybe tell her a little about what will happen..Or ask her CF doc at her next appt to go over it with her. Unfortunalty my daughter grew up constantly in and out of hospitals so it wasn't so much a fear of going in but more of a hassle to her.