impacted; survey info on my kiddos

[Guest guest]

Hi everyone,

Geez, I am totally swamped. Sorry no time to write/reply lately!!

First, --welcome back, how nice to hear from an " old " friend!! Too bad

you moved, I was still thinking we would someday meet since GA is so close.

Hope na gets better.

JOSHUA update: OK guys (gals, etc...) I get to eat my words. Remember how I

said that we were sure he isn't impacted? Well, unless the x-rays lie, he

def. is impacted (better known as FOS--for newbies, thats full of sh#*)

Anyway, Ron took him and the x-ray to the GI who said he's really backed up.

So now he is on Miralax. Likely he needs more enzymes...but he is on the

highest dose so first we try less enzymes. Wonder what the CF doc will say

about that? Anyway, he still hasn't pooped much after 2 days of Miralax....

AND HE IS DOWN TO 30 POUNDS...and that is with the impaction... Geez, if

its not one thing, I guess its another, huh? The grease stuff is from

malabsorption, but the large liquid stools are where new poop is running

around the impaction. Ron said he pooped out his breakfast while at the GI

appointment, which was still recognizable as his morning (blue!) oatmeal...

Ron also gave the GI doc a gift of greasy undies! (I was in Nashville on

business, and had the baby and Mall who stayed with Mom by day)

Anyway, now Mallory has had an increased cough and wheezing week.... We saw

in Nashville, too, and she, too, now has a pretty junky cough. ph

is still his healthy little thumb sucking self! Miranda and are well

in spite of winter colds they seem to get and keep. is so happy being

here...(not to mention helpful). , on the other hand, is one stubborn

child...but we are working on it! Took the kiddos to Chucky Cheese tonite

for a birthday party....lord knows what germs we picked up there! Ron has

gone to Nashville for the weekend to go to the CF conference at Vandy (yes,

we hate Vandy, but Ron, shelley, and my parents are going anyway since Dr.

is speaking....they want to all talk to him, of course) and also (my

gift to the good Daddy) to go to the Prine/Iris Dementh concert with my

parents. So the weekend will be wild...just me and 7 kids, I bet I don't

read mail much this weekend!! (see now its 3 a.m.....)

For the survey, I already responded, but before you requested the additional

info. I already said, we don't know JOshua or Mallory's mutations.

has delta f 508. was diagnosed at 22 months. was 10 months.

Mallory was 15 months. My cousins baby, just diagnosed, is 4 months. I

don't know if they know the mutations yet....but we suspect that that side of

the family is the side with deltaf508. My dad's heritage is German, and my

dad has done tons of research, thinks he has one of the German mutations not

commonly tested for. Ron's heritage is German as well. I am not sure of my

Mom's, I think mostly mixed. So my kids got 3/4 German and 's got

mostly a European mix...with 1/4 German.

As far as how they have done, hmmm....., Mallory, and all three

have digestive involvement. had some lung involvement at diagnosis

(hemophiis and abnormal x-rays) but no real lung problems now, though he

cultures for PA and S. Maltophilia. He also cultured for alcaligenes once.

He has had major sinus problems, including tons of polyps, had surgery last

year. One brief IV tune-up and one long tune-up. He had PE tubes as a baby

and had bradycardia and apnea as an infant. Mallory has tons of lung

involvement...has maltophilia and PA also. Chronic cough, chronic wheezing.

Has chronic sinusitis and has PE tubes. Has asthma and GERD. Had RSV twice

last year, hospitalized both times, second time in ICU. She has been in

hospital for 2 GI procedures, for PE tubes and adenoids, for bronchoscopy

plus the two times for RSV. Oh, and once as a 3 week old for bronchiolitis.

has no lung involvement currently. Had pneumonia when diagnosed,

tune-up then and another tune-up last winter, though she has never cultured

for anything. She also had a GI hospitalization last winter.

The cousin's baby is still in ICU getting 3 diff. IV antiobiotics, on a vent,

feeding tube, etc. Its frustrating for me because the parents know so little

that we can't get good info. (like, gee, what were the mutations--so we would

know which side of the family which was on...) or like, what is the baby

culturing, what were the vitamin levels....etc.

Is that enough for your survey?

Take care, everyone, and I do miss you....

Jen