Re: various stuff, and q's about European conference

[Guest guest]

: and everyone:

BTW, Dr. Cutting is the lab that our Pulm. called about doing genetics

mapping on my kids, though I think our PUlm only got to talk to a tech, not

the actual Dr. Cutting... Anyway, they told him that they would not do

mapping on my kids because they are pancreatic insufficient, and that they

are only currently doing mapping on pancreatic sufficient cases. (our doc

was convinced that they just wouldn't do it for him since he isn't from some

big research hospital, so he asked the UAB doc to call and try to get them to

do it--so far, I haven't heard back from UAB, but the last I heard was that

they wouldn't do it on the kids, but would on me)

REGARDING books, etc. on CF. CF and Me by Tummel is probably the best one

for kids your kids ages. WE have another one called Big Pats LIttle Pats,

but it is really only about Chest PT. Also, there is " Mallory's 65 Roses "

which is also very good--someone gave it to us right after was

diagnosed but we didn't read it to the kids then because it was too confusing

for them--that is when we thought Mallory did not have CF. With a name like

Mallory, isn't it odd that the book has to have her name in the title? Its

not like Jane or Bob or something common.... Both books are given out free

by the pharmacies.

Good luck everyone, and sorry I don't have more time to answer emails...

Jennie