Kids with CF talking to other Kids with CF

[Dreamweaver1019]

I also have a grandson named Jonah who is 6 with CF.

(NEB)(BLOW) I'm so glad to meet you. I am raising my grandchildren right now due to unfortunate circumstances, however, they are twins, a girl, Clara & her brother Jonah, who has CF. She does not?. I think Jonah would also like to talk to someone his age with CF. I have already checked into trying to find friends w/CF only to find the can't hang out w/other w/CF because the medical society feels different strains of CF can possibly be transferred to each other. It's very sad. Jonah is also very smart, he's in first grade getting ready to start school again in the second. He's a normal little boy, but can be so grown up because he's had take medications and do treatments since birth, and he hates them, LOL! I can understand that. Please feel free to write me back either on here or at marshaneeley@yahoo.com. I believe it would do them lots of good! Thanks so much for your post! God Bless (PRAYING)!

 

[Carol H]

Hello everyone!! I would like to Thank you!! (L)for all the kind words, prayers and support for Connor. He is HOME from the hospital. The last few weeks have been really rough but he is a fighter just like Batman Connor was on antibiotics.. 2 were new ones and he did have another reaction to the meds. We are very lucky because it was nothing like the reaction he had in last Oct. He did have a fever and break out in a rash, then rash spread and we were very scared for him, but they stopped all meds and the rash and fever went away. Then his labs were all out of wack, Connor will see allergy specialist and still will have bronch and tonsils out. He came home with his PICC line the docs left in because his PFT are not back up yet, he is at 85.. that really is not at all a bad number but down from the 106 he was at before all this started He will go to CF clinic next Thursday they will do labs and PFT's again hope they are up!! Or as Connor calls it " level up" then docs will remove picc if not then we talk about starting meds again?
I am looking at the little things now and counting my blessings, he is just the bravest kid! He is so much better, rash almost gone.. He is SO SO SO SO happy to be home!! He was over at my house today for awhile and he just ran around saying I am FREE!! Thank you all again for your support for Connor and me!! Prayers work!

 

[Carol H]

We would love to have more pen pals!! I sent you a PM with our email address! Connor told the nurses about his pen pals and his new friends. He has a new child life specialist and he told her all about the pen pals but we do not write letters we write emails!! He also made it clear that you have to be a kid and you have to have CF and like angry birds funny that is from one of his pen pals.. so I guess Connor made it a new rule
She works with a lot of kids at children's hospital with CF she said what a great idea these kids need support too!! They are trying to work with new ways to reach out and help kids and teens with CF.