Reply to Jen

[Guest guest]

> ps, Ronda, it was good to see a post from you again

> Jen

>

Hi Jen. I hadn't realized it had been so long since I posted. Things have

been going well with Jess, we've just been really busy. I don't get online

for 2 or 3 days at a time and then by the time I catch up with my email

anything I have to say has already been said.

I'm glad you and the kids had a good vacation. Sorry to hear Mallory isn't

doing so well. We're still trying to get some weight onto . All of

our friends who have been saying all along that Jess didn't look like she

was underweight are finally seeing the problem now that they see Jess in her

bathing suit. She is sooooo skinny!!!!

Welcome home, and have fun settling in again!

Ronda

[Guest guest]

Hi Jen,

You asked if had ever done IV's. I feel sort of sheepish, given that

you are struggling with so much with you 2, (or should I say 7?). But no,

has never had IV's. She has never had pneumonia, nor been

hospitalized. With the exception of one big illness when she was two (which

eventually went away, leaving a bunch of perplexed doctors in its wake),

she has never been terribly sick. Just endless ear infections, " colds, " and

the wierdest/stinkiest bowel movements around. But nothing that ever drew a

lot of attention. That is why she went until age 6 without diagnosis. And

diagnosis then was because I described her bowel movements to a pediatrician

during a routine school physical. She went to several different peds as a

small one, for a variety of reasons, and I had given up mentioning it, as

none of the others seemed too concerned. So it was the first time that

particular doctor heard the story. But he zoomed right in on it and

immediately sent us to UCLA for a sweat test, which was very positive, as

was the second test. Genetics followed, and she has two identifiable genes.

They started her on enzymes right away which she clearly needed. But

otherwise, this kid does very well, despite continual " mystery " abdominal

issues, and colonization with PA the last two years.

Yet I always feel edgy, like I am waiting for the shoe to drop. Every ache

and pain is a concern; is it " normal " or is it CF-related? This could make

anyone a hypochondriac.

But enough about our relatively trivial stuff. You have much bigger things

at hand. Please know that I will be thinking of Mallory tomorrow and hoping

for a smooth port placement.

E

(mother of , 11 wcf, and , 3 and kicked out of swim class

today for refusing to listen to or follow directions. This one is too

much.)

Re: Ports and misc replies

> ,

> thanks very much for the upbeat words! I appreciate it. Have you not

ever

> had IV problems?

> Jen

>

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> Failed tests, classes skipped, forgotten locker combinations.

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[Guest guest]

Janet

thanks again for your reply. I sent a longer response to the list, but

forgot to mention that we will ask about doing tobi every month with her for

awhile....and see if that does help.

The second opinion we got they told us quite frankly that our doc is more

aggressive than they are!

Don't you ever find it sobering that still there are some kids who die at

ages 5 and 6 in this day and age with CF? WE lost a 6 yo at our clinic last

yr (she saw the other CF doc, not ours, though, but STILL). I don't think

Mallory is anywhere near that, or anything, but just find it quite

frustrating the variance of Cf in all kids. I just wish it could always be

blamed on " lack of treatment " (as in Maggies foster kids, prior to her

getting them...)

Thanks again

Jen