and Jen

[Guest guest]

-

Congratulations on the great clinic visit! I think 's PFT's were great.

You should be celebrating! It's also really wonderful that you pulm agrees

to give her TOBI. The results of the study on PA show that TOBI does seem to

help some. I'll be posting it soon. So....keep your eyes peeled! LOL. Hey

doesn't Klebsiella sound like Kielbasa? Just a thought. What kind of a chia

pest is this bacteria? I've never heard of it before. I'm also psyched that

you doc will do more frequent cultures. Believe me I'll be fighting this

fall. If they won't agree to some changes, I'll be making an appointment in

Rochester or Syracuse. Just a thought. How about a survey on Vest use? It

really seems to be helping a lot. Her cough is definitely decreased.

She doesn't spit up much sputum, however she is also on Pulmozyme (no

bleeding). As for expense...or HMO has cover half the cost and I haven't

gotten a bill since. I will fight for the rest if I have to but since they

haven't bothered me I'm not saying anything. If I do get a bill, I'll just

pay what I can. As long as I try they can't take it away, is my motto!

<<<Single breath oxygen test

is a good way to track kids with milder CF because it picks up subtler signs

of what's going on in the lower airways>>>

Please let me know what happens with this I believe is in this

" category " of CF kids.

Jen -

Thanks so much for the Disney info. I'll have to talk to the " family " and

see what they think is the best. I guess I'll just take off if I want to.

I'm not waiting around for older kids and I'm definitely not waiting for my

mother-in-law to get her butt in gear. She is terrible! I'll see if I need

more info later.

Love & Hugs! Kathy G. (Mom to 6 w/CF and (the runaway kid) 3

w/o/CF)