Re: cfnewborn

[Guest guest]

Emma

Welcome to the list (though not the " club " of Cf parents, so to speak...no

one ever wants to welcome another mom to holland in that way...)

Anyway, it does get easier as the first year goes on, and thereafter, so hang

in there!!! I am happy for you that your little boy does not have CF.

Sounds like you have your hands full.

In some small way, CF also changes your life in good ways, too...I know that

sounds a little strange, but we appreciate our kids so much more, hang on to

the little things, treasure every smile, every hug, everything...... And,

there is so much HOPE for children born with CF today....hang on to that with

all you've got!

And, let us know what we can do, what questions we can answer, etc...

take care,

Jen

Mommy of 7, including ph 16 months with CF, Mallory 3 with CF, RAD, GERD,

OSA, new port-a-cath; 4 with CF; 6, Miranda 8, Brittany 7 yo

foster daughter soon to be adopted by us; ERica 4 yo foster daughter, soon to

be adopted by us also ; also aunt to 3 yo with CF

[Guest guest]

Hello Emma,

Did you ask the docs about Nystatin for Sydney's thrush. You dont say

whether it is in her mouth or a skin rash, has had both, and the doc

gave him nystatin cream for the skin and a nystatin that was put in his

mouth, it seemed to work great for him. is 15 months old, he too was

diagnosed with failure to thrive before being sweat tested, and had some of

the same things you mention, he didnt have the meconium thing though.

I dont remember seeing your introduction, but then again I havent been

reading all of the posts as has been in the hospital for the past week

and a half, he is doing better now, and hopefully will be home soon.

Take care,

mommy of 4, wcf

[Guest guest]

emma , welcome to the list

[Guest guest]

Hello Emma Welcome to the list we are just a bunch of parents,grandparents,

aunts, sisters ,brothers, etc,etc we are a great big family who have cf in

common .This list is a very good place to get help or to blow off steam or

doctors if we need to.Feel free to ask anything and may you have some fun

here also.My name is Becky and I am mommy to 8 kids Harold3rd is

18carrier,16 w/cf,15carrie & adhd,Crystaline14carrier

7carrier, 5 miracle no cf at all not even a carrier!,Rebekah

3w/cf,Gabrial 17 months carrier.Boy that took forever . Please feel free to

ask anything .BeckyB.

[Guest guest]

Boy Becky,

Eight children, and I think I am going to crazy with 4, dont know how you and

Jen do it with all of your blessings, just wanted to say hello, and thats

about it,

Love ,

mommy of 4, wcf

[Guest guest]

> hi my name is emma and i am the mother of an 11 week old daughter

> sydney who was diagnosed at 4 weeks of age, we also have a 2 1/2 yr

> old son, william. sydney was diagnosed after deing in the hospital

> for a week for failure to thrive. the sweat test was the last test

> they did we didnt think she would be positve, she was, my son is

> negative. that wouldve thrown me more over the edge. now looking

> back she had lots of signs right at birth they were just blamed on

> other things, meconium took a day or two to pass and it was very

> different than williams was, a cough they said was from being a

> secton and not having the amniotic fluid squuezed out in a vag.

birth

> and now that i really now how to examine poop, hers is greasy. She

> is doing great so far, they say. We are in Saratoga ny and we see

> great drs at albany med center. Syd is on enzymes, has a neb. with

> albuteral and another nonsteriodal med. for her lungs, we do her

cpt

> twice a day and she is right now on antiob for something or

another.

> That seems to be the way it goes i guess. She also has an awful

case

> of thrush that wont leave. shes had it for weeks now. the antib.

keep

> it around. We are getting adjusted to all of this, it is very

> tiring. i stay home with the kids and have two a bro. and sis.

that

> i watch twice a week. they have been with us since william was 5

> mos., and i wasnt gong to go back because of syd, but they are such

a

> part of williams life that its not fair to him, i have to keep

things

> pretty normal for him. I moniter handwashing etc, i cant keep her

in

> a bubble and we go to playgoups and have friends over so i figured

it

> would be ok. it is also good money and i am to tired to work

nights

> and i wont put them in daycare. i do get scared syd will die but i

> have to remember no one is guarenteed tomorrow so live for the

day.

> i would like to hear how it is growing up with cf and ow the

children

> handle it. please e mail me for advice, support, etc. i am just

> learning this computer and i may have already sent a post or i lost

> it. sorry if this is a repeat. emma

hi Emma,

my son Noah was born with maconium illiues where they maconium is

stuck in the small intestine. he was diagnosed at 1 1/2 weeks old

and spent 7 weeks in the hospital. He had three serguries by the

time he was 4 weeks old. he then spent 6 days in the hispital in

may. i know that is overwhelming, but things do get easier. Noah

is now 7 1/21 months old and wieghs 14 pounds 6 ozs. as of last

friday. He takes Creon 5, neb treatments and cpt. he also was

recently on the tobi treatment for 14 days. that stuff works pretty

good when they just can't seem to shake a cold. Do you know what

mutation she has? Noah has the Delta f508. Which is the most

common. we also have an 8 yo old daughter from my previous and she

hasn't been tested yet but we are pretty sue that she doesn't have

since she has never had any problems and the have different

fathers.NOah is just now cutting about 6 teeth at once. boy i don

not enjoy that. just enjoy every moent you have with her. i also

stay home and am on my computer atleast once a day. feel free to

email me at jleffler9499@....

mom of Breanna 8ywocf and Noah 7 1/2 mos. wcf

[Guest guest]

Have them try Nystatin for the thrush, or fluconazole if it shows up other

places,

says she with the wisdom of a cf patient, mom of 2wocf and 1wcf! n

[Guest guest]

Emma

I am sorry that you are going through this. I know it can be so tough.

It has got easier with time. I have a 9 month old who got a hole in his

large intestine and had to have surgery 3 days old. They take a small

part of the intestine out of the body to let it heal. Then they put it

back in a couple of months after it has had time to heal. He does pretty

well with the lungs but has problems with the bowels. He gets

constipated if he doesn't have a bowel movement after almost each meal.

He scrame for what seemed like forever while his whole tummy was getting

use to life, but now he is the happiest little boy.

It can feel so overwhelming to try and get in all of the treatments.

I'll tell you though we can tell a difference if we don't get them in. I

don't know how your baby does, but screamed for the first couple of

months while giving his albuteral. Someone suggested a mobile above him

and that did help some. It was always easier when he was asleep to do it

though.

Our doctor has given us much hope for the stuff they have come out with

for CF patients. She really feels that our children will live long

lives. My father in law was going to Germany to give a talk on Physics

and he happened to be seated on the plane with a well know CF doctor. He

said that if you really take care of the things, like the cpt treatments

and all that he has many live long lives. He is treating one man that is

in his late 60's.

Any way this list is really helpful, although I don't write all that much

on here I am really touched by the way everyone helps each other.

Good luck and you can e-mail me anytime.

Jodi Hansen

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