Truly impressed with responses

July 29, 1999

Hi everyone,

I am truly impressed with all the helpful responses I got re: my request for

info. on Canada or New York CF Centers. (so impressed that I even managed to

send short notes to each person saying thanks, and believe me that is rare

for me, usually too busy...) I had forgotten how USEFUL this network can be

beyond the support and education I rely on the lists for. I would try to

publicly thank everyone, but I got soo many responses, I am afraid I would

leave someone out. So to everyone who responded, thank you so very much and

here is the plan.

I should also comment that we have a truly remarkable Pediatrician, he has

really gone the extra mile on this one, even calling information himself to

get the number for the Walmart pharmacy in Watertown NY so he could call in

the scripts. He really got the ball rolling and called our CF center (but

our CF doc is in England, go figure!) Anyway, the terrific Nurse Practioner

Phil Noe also put some effort in here and called us himself to help figure

out a plan, and he also did some research to find a local CF Center in case

we need it. End result was that my parents (JEMsDADA to the cystic-l list)

picked up prescriptions for Mallory and ph both at Walmart in Watertown.

(thanks Dad) and we are going to make another effort to get her better

without having to be seen, but we now have numbers for the Kingston CF Center

(which is closer) and the Ottawa center (where we know some people), so if

need be we have two excellent options. Mallory still has a terrible cough

tonite, but her nose does not seem as nasty, so we shall see what happens,

we are keeping our fingers crossed. I kept her inside today, just in case

something in the air is making it worse. Oh, and the CF clinic said to add

five more days to this Tobi cycle, which makes alot of sense. I was very

worried if she was this sick ON the tobi, what would happen when we stop?

(which was supposed to be today!), so at least now we don't have to worry

about that...

Again, thanks to everyone on both lists, for all your support, advice, etc.

Take care,

Jennie, mom of ph almost six weeks old; Mallory 21 months with RAD, GERD,

CF; 3 with CF; 5, and Miranda 7 and aunt of 2 with CF (who

flew home today with her mommy, and we already miss her....)

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