RE: Torsten and Angi, just rambling.....update on our old ped.

[Guest guest]

DEAR JEN,

You will be just fine. You and Ron always can " out guess " your

docs anyway. you will do great. Of course you can call your

wonderful ped Doc friend and just as advise also, he wont

have to put the IV in tho ;:) take care and we'll all count on

everything going great after tuesday and beyond.....

..Love to you all, with wonderful wishes and vibes coming your way.

lOVE & HUGS,

GrandmomBev

Torsten and Angi, just rambling.....update on our

old ped.

Torsten and Angi,

Since you have both " known " us since Mallory was just a baby on o2 and

undiagnosed, she can sure be a frustrating child (medically, that is), would

you agree? Sometimes I do not understand why she does like this, and yet

, same treatment, same aggressiveness, does great; and even more

bizarre, cousin has virtually no CF related problems with almost no

treatment (cept enzymes and one neb a day, one 15 mnute vest a day) does

actually terrific.....

Anyway, just venting I guess. Torsten, do you remember back when we were

exploring all kinds of potential things that could be the root of her

problems? Gee, you were the biggest help of all, sending me all kinds of

things to look into. And Angi, I so remember you and Carol (thx3andme)

hunting us down when Mallory was in PICU. Thank goodness for old and also

for all our newer friends on this list.

Also for those of you who have been around for awhile, heard from our old

ped. today, he is back in town, but of course not practicing medecine.

Bless

his heart though, he said if we needed him to he could get an iv in her (and

we believe he could, too, but how would we then explain it to the CF doc) I

can just imagine the conversation, gee, do you think you could send out home

health with the tobra and fortaz after all, you see " so and so " managed to

get an IV in her....blah blah blah, I really don't want to freak out our

poor

pulm like that, he has been too good to us.

but, I miss our old Ped...both his wonderful way of dealing with my kids,

his

skills, etc and have really missed his friendship over the past year. since

he is back and both the families are friends, though, the friendship will

continue.\

AND OUR NEW PED IS ON MEDICAL LEAVE FOR AT LEAST A MONTH Do we know how to

pick them, or what? Anyway, its a good think that our Pulm. seems to want

to

manage their care himself anyway....I don't think he wants much interference

from the Ped. anyway.....and its a good thing he is so aggressive, or I

don't

know what we would do, go crazy I guess....without a ped. as backup.

But this one horse town is making me crazy in one respect. BOTH the ENT and

the CF doc will be out of town next week...and the ped. is on medical leave.

What the he#% will we do if something goes wrong on Tuesday?

Such is our life these days....thanks for letting me ramble on.

Take care everyone.

Jen

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[Guest guest]

ron88jen@... schrieb:

Sometimes I do not understand why she does like this, and yet

, same treatment, same aggressiveness, does great; and even more

bizarre, cousin has virtually no CF related problems with almost no

treatment (cept enzymes and one neb a day, one 15 mnute vest a day) does

actually terrific.....

Hi Jennie,

that's one of the results of the European CF Sibling Study, that the kids with

the better treatment are doing worse, which means that you can't compensate

genetic or physical disadvantages with agressive treatment. Hopefully Mallory

will outgrow her skill, to catch every bug or virus in the house. I can feel how

frustrating this must be for you.

I think you have already guessed, that I sent my mail about port placement,

before I read your mail about that subject. I am too slow for you :-))

Here is keeping my fingers crossed that everything works well tomorrow. Maybe

you could ask your old ped to stay " accidentally " in the lobby of the hospital.

Bye-bye

Torsten, dad of Fiona 3wcf

e-mail: aberdeen95@...

[Guest guest]

Gosh, Jen... making me think back that far also makes realize how far we've

come in the past couple of years since my kids were diagnosed. on

5/15/98 and on 6/1/98 - I sure didn't have a clue what we were in

for... of course, most days I still don't! :-) It also makes me remember

what great friends and sources of support we've found!

You know, I wonder like you why the kids are so different... Here we have

and with basically the same genetics. Only, 's always

fighting something, cultures PA and, needs more treatments, has no

appetite.....etc.... and Em has an awesome appetite, has never had a resp.

infection (knock, knock, knock), cultures nothing (even on a bronch).... why

the big difference? I just count my blessings that Em doesn't get as sick as

and pray that will " grow out of it " . Am I dreaming? Maybe, but

hey, what's life without dreams!

Angi