Parents w/CF and Talking to Kids

[serendipity730]

I can't believe that someone posted one of their projects in the middle of a thread about a mom with CF dealing with telling her daughter how ill she is. I normally reply to these project post, but I feel this was very rude and will not.
Anyway, Amy, I will really feel for you. I don't have any children now, but I hope to in the future. I def. think that if something serious should happen, Emily should know. It might be a good idea to alert the supervisors of the trip to your situation (perhaps w/o Emily knowing) Maybe you could just have a conversation with her to reassure her that it is good she is going and if anything should happen u would let her know. It sounds like Emily is very bright and intuitive. Chances are if you aren't feeling well, she has noticed. Maybe it would ease her mind to talk about it.

 

[anonymous]

Hey Jt
Thanks for the advice. My son is 12 yrs old and going into the 6 th grade. I will inquire on the teen site. My son started out with chest therapy but soon was put on the vest. He had to take enzymes and since the vest, albuterol, advair and pulmozyne he has not gotten pnemonia in almost 2 years. He also had a mitral valve prolapse and acid reflux. He takes Ultrase Mt 20 for his nutrition. Thats a blessing because the hospitals around us so clueless. We see a Cf doctor 4 hrs away. If he gets any infections they send him to the hospital up there. The doctors biggest worry is that they say he is in contant nutritional failure. For his age he is only 4 ft 2 and his weight flutcates from 56 t0 59. We have tried scandishakes and ensure and others to no avail. Its just nice to talk to people who understand. I am from a very small town and no one around here know anything about Cf. Eric feels so different from his friends. He also has a 10 yr old brother and 2 yr old sister who doesn't have Cf. We are still learning so much about Cf.
Thanks for listening
Kandi mother of Eric (12 w/cf)<img src="i/expressions/face-icon-small-smile.gif" border="0">