and Mallory clinic visits/ congrats Kathy

[Guest guest]

Hi everyone,

First let me say, congrats to Kathyybeela---yeah, sounds terrific, 8lbs,

weigh to go (hehehe)....!!

Ok, had CF Clinic appts today with and Mallory. So here goes (all

good..for a change, yeah!)

1. Well the only bad thing was that we had to wait almost an hour and a half

to be seen! Very frustrating, I must say. Then, now here's the funny part,

they always give the kids cool toys, well today they gave them those little

balloons with faces that are filled with sand (I believe they are stress

balloons) Anyway, Mallory bit a bite out of hers and needless to say had a

mouth full of powder like substance...so when the pulm. comes in, she was

standing over the trash can spitting out white substance!!! When we

explained what had happened, he said, I hope thats not a toy we are giving

out, hehehehe. Like he has said before, if its going to happen,it will

happenwith my kids...

2. We decided NOT to do cultures, since we know what they culture anyway

(Pseudo and Maltophilia and various ...other stuff..) and he said if we

wanted we could go to every 4-6 months on the cultures, doing them then just

to make sure their bugs haven't become tobi resistent. But () he said

if we want, he is more than willing to culture them every visit; we said no

thank-you, too traumatic, unless we really need or expect to gain new info.

I know that you, , have wondered why your pulm is so controlling about

this, so thought I would tell you our pulm's take on it. BTW, he said that

up til now HE WANTED the frequent (he has been doing almost monthly since

January) cultures so he could get a good clinical picture as well as a

picture of how the tobi effects their cultures.

3. weighed a tad shy of 31 lbs!!!! Yeah! (and was only 30

lbs, so finally he is a little heavier than his cousin 1 yr younger, also

with CF) And Mallory was a whopping 24, gaining a full 2 lbs since her last

clinic visit, yeah!!! Hey MO, I guess all those hotdogs and boosts paid off,

huh? They never do the percentile thing at the pulm's office, I guess they

will do that at our next appt,which is their annual...(the GI does them every

2 months anyway) And they looked good otherwise. 's x-ray was

hyperinflated but no other evidence of effusion or anything, so that was

good. They didn't do an x-ray on Mallory, when we asked why, he said that

she has had like 5 this yr and didn't have any in 99, so he was due

one....by that point, we didn't want one on Mallory, b/c we were already late

to pick up the other kids at school (15 minutes late, actually) So, no bad

news at all. said that 's next visit is also her annual, and so

all three of the kids are scheduled the same day for CF clinic (I bet they

only do that once, hehehehehe)

3. He did some minor speculating about culturing early for pseudo when ron

asked him directly....he did admit that its not good, but also said that

there are so many other variables, blah blah, blah. He is also thinking

their mutations may be associated with lots of bacterial colonization, but

said that so many things impact this, like for example other genes might

affect how you do just as much...

4. As we were walking out the door (in the hallway, I might add...) he came

back up to us and asked THE question...re: ph, are you going to have him

sweat tested....blah, blah, blah. Anyway, he really had to stutter almost to

ask. So, we told him that we thought since we had negative experiences with

Mallory we would wait, at least a year, if he does not have any symptoms. To

that, he said, well the longer you wait the more reliable the test is.... but

he added that research indicates that the kids diagnosed as babies spend less

time in the hospital long term, etc. He finally said that if he was gaining

weight, etc. he was ok with waiting (not like he is ph's doc anyway,

huh?! But I suppose the assumption of responsibility for our whole family

was nice, if nothing else.) We didn't exactly mention the reflux, etc probs

we are having... Oh, and we also had to tell him about our PEd. being in

rehab, now THAT was an awkward conversation. OH YEAH, MO and he told us that

his wife is pregnant (first he asked how many kids we have now, we said 5)

and then he said she is having twins!!! Interesting, huh? , I have

never in my life seen someone work so damn hard to rebuild/repair a

relationship, either that or he is the best damn con artist I ever met.

(Carol, thx3andme, are you on this list yet???)

Maybe you should go to the partner for awhile....you might feel better. I

know that the break we took really helped.

Oh, yeah, and we asked him if he could tell us anything more about that new

bacteria c.pestis. He said, hey, with your kids, theres no telling, I'd like

to say you don't need to worry, but your kids will surely prove me wrong and

get colonized with it if I say that, so then he dropped the subject, BUT NOT

BEFORE MENTIONING THAT HE HEARD THERE WAS A SERIOUS OUTBREAK AT CHIA

HOSPITALIN OTTOWA, CANADA so he warned us to never go near any Canadian CFers

(to which we replied, " uh, oh, too late " .....) (hehehehe---its a joke,

newbies)

OK guys, thats our good news, I am really excited! take care, everyone.

Jennie, mommy of 5, blah, blah, blah....