Re: (unknown)

[Guest guest]

Bev,

I just love hearing how wonderful your Granddaughter is doing! She went thru so

much in the beginning and hasn't turned back since! That's because she has

wonderful parents and an exceptionally loving Grandmom

I can hear the pride in your typing as in your heart! Your work is an

inspiration to all of us.

Take Care,

Stein.......mom to CF (15 mo) & Tori wo/CF (4 yr)

(unknown)

Hi, this is Kirsty and my son is 10 weeks old and has CF.

I am slowley working my way around all the info on CF on the web, it is

incredible. Anyway I am looking forward to talking with you. I am not too

sure what this email does so I would appreciate if someone could explain to

me what this is all about!!

Thanks!

Kirsty

_________________________________________________________________

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IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

--------------------------------------------------

[Guest guest]

HI Kristy

Welcome to the group

How was your son diagnosed?

I'm a SAHM mom to a 15 mo old w/cf. whom is finally on the band wagon of gaining

weight and doing great. I also have a gorgeous 4 yr old daughter wo/cf.

We live in mass.

We'd love to hear more about your family

Take Care,

Stein........mom to CF (15 mo) & Tori (4 yr)wo/CF

(unknown)

Hi, this is Kirsty and my son is 10 weeks old and has CF.

I am slowley working my way around all the info on CF on the web, it is

incredible. Anyway I am looking forward to talking with you. I am not too

sure what this email does so I would appreciate if someone could explain to

me what this is all about!!

Thanks!

Kirsty

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

[Guest guest]

Welcome Kristy - this loop will be a lot of help to you and your new son. I

wish you and your family the best.

Carey - Mom to Calvin and Liam

[Guest guest]

GREAT....ENJOY !!! :)

thanks for letting me know it arrived.

LOVE, GrandmomBEV

Re: (unknown)

Hi grandmomBEV,

Your package arrived yesterday and already read

the book,now my kids will

read it.Also thanks for the buttons.

Debbie 's mom

[Non-text portions of this message have been

removed]

[Guest guest]

Thank you sooooo much. You gave my heart a big

boost today.

I wish yours well also

LOVE & HUGS,

GrandmomBEV

Re: (unknown)

Bev,

I just love hearing how wonderful your

Granddaughter is doing! She went thru so much in

the beginning and hasn't turned back since! That's

because she has wonderful parents and an

exceptionally loving Grandmom

I can hear the pride in your typing as in your

heart! Your work is an inspiration to all of us.

Take Care,

Stein.......mom to CF (15 mo) & Tori

wo/CF (4 yr)

(unknown)

Hi, this is Kirsty and my son is 10 weeks

old and has CF.

I am slowley working my way around all the info

on CF on the web, it is

incredible. Anyway I am looking forward to

talking with you. I am not too

sure what this email does so I would appreciate

if someone could explain to

me what this is all about!!

Thanks!

Kirsty

__________________________________________________

_______________

Get your FREE download of MSN Explorer at

http://explorer.msn.com/intl.asp

PLEASE do not post religious emails to the list.

-------------------------------------------

The opinions and information exchanged on this

list should

IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING

ANY MEDICATIONS OR TREATMENTS.

------------------------------------------------

--

[Guest guest]

Welcome Kirsty!

I guess you've figured out how the emails work by now. It can be overwhelming at

first but it doesn't take long to work out who everyone is!

Hope is doing well and ask lots of question because everyone is SO helpful

here.

Kristy

Mum to Connor 9mths wcf, Jayden 2&9mths wocf

[Guest guest]

HI

Don't be a stranger

Sounds like Alyssa has a mind of her own, even if she's not eating much, those

shakes are doing the trick. GL at your clinic appt.

Take Care,

Stein......mom to CF (16 mo) & Tori wo/CF (4 yr)

(unknown)

Hi everyone! I have just rejoined the list after

having my email accounts changed over the past few

months. My name is and I have three boys,Chris

who is 16 (and hasnt been tested yet),Dakota(Cody

13wocf),(10wocf)and Alyssa (22 months wcf). I

am mostly a lurker but I do reply and post

occasionally.

Alyssa had her last " tune up " at the end of April

beginning of May. She cultured pseduo in Jan and

struggled for months on and off antibiotics and with

no appetite. The tune up helped her feel better and

her appetite returned...for a couple of months.

She began to lose her appetite again in July and now

she has a funky cough. I have taken her to her peds

office and they dont seem to have a clue... We missed

her cf appointment a couple of weeks ago because my

grandmother passed away so I wasnt able to reschedule

her appointment until next week. I even tried to get

a sick appointment at her cf clinic and wasnt

successful. She went to her GI appointment two days

ago and they said her lungs sounded great. LOL...she

makes a fibber out of me. Anyhow, they felt the only

reason she wasnt losing weight is because I have her

thriving on pediasure. She will not eat!!!UGHGGHHH!

I know she has something going on...Atleast she starts

back up on tobi today so that is the good news!!!

take care,

mom to 3 boys and 1 girl(Alyssa wcf)

__________________________________________________

[Guest guest]

WELCOME! and , love,

n Rojas wcf, mom of 3 adults, youngest wcf; I am widowed, not due to cf

[Guest guest]

Send me your mailing address & i will send you some info & some great tapes.

it isn't Dr Gloom time now.

LOVE & HUGS, grandmomBEV

(unknown)

I have 2 babies who have cf. One who is Micheal, and he is sixteen

months. Then there is who is 4 months. has been in the hospital

three times now. He has been having a rough time. Micheal, I never even

thought he had it. The Dr's came and told me while was in the hospital

last week. It was a hard hit in the face. I have been holding up pretty

good so far. I have put all of my faith in God. They are very wonderful

kids. If anyone could give me any advice please e-mail @

SLStrunk@...

Thank you,

S

_________________________________________________________________

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PLEASE do not post religious emails to the list.

-------------------------------------------

The opinions and information exchanged on this list should

IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

--------------------------------------------------

[Guest guest]

I don't have any advice as I only have one little with cf. Bless your

heart. What a tough blow to have to deal with. Where are you from? We

will be thinking of you and your family.

Dawn, mom of 4, 5 and under, the youngest wcf

(unknown)

>

>

> I have 2 babies who have cf. One who is Micheal, and he is sixteen

> months. Then there is who is 4 months. has been in the

hospital

> three times now. He has been having a rough time. Micheal, I never even

> thought he had it. The Dr's came and told me while was in the

hospital

> last week. It was a hard hit in the face. I have been holding up pretty

> good so far. I have put all of my faith in God. They are very wonderful

> kids. If anyone could give me any advice please e-mail @

> SLStrunk@...

>

> Thank you,

> S

>

> _________________________________________________________________

> Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

>

>

>

> PLEASE do not post religious emails to the list.

>

>

> -------------------------------------------

>

>

> The opinions and information exchanged on this list should

> IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

>

> --------------------------------------------------

>

>

>

[Guest guest]

-

Yes, you have been hit hard. And yes, these are wonderful children. If you

can get your hands on a book called Cystic Fibrosis - A Guide for Patient

and Family by Orenstein, you will find it very helpful. My sister is

25 with CF anf I have a son 2.5 yrs with CF. A lot has changed in the 25

years that my sister has been living with CF, and I never expected to have a

child of my own with CF. My pregnancy was asurprise, and amnio revealed

CF - double whammy! I have to tell you that , prays God, both are very

healthy. We have had many hurdles, but in the hands of good CF doctors, we

have pulled through. Let me know if there is anything I can help you with.

Whathas had your 4 month old in the hospital?

[Melinda Pearson] Melinda

(unknown)

I have 2 babies who have cf. One who is Micheal, and he is sixteen

months. Then there is who is 4 months. has been in the

hospital

three times now. He has been having a rough time. Micheal, I never even

thought he had it. The Dr's came and told me while was in the

hospital

last week. It was a hard hit in the face. I have been holding up pretty

good so far. I have put all of my faith in God. They are very wonderful

kids. If anyone could give me any advice please e-mail @

SLStrunk@...

Thank you,

S

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

[Guest guest]

Melinda,

Did you know you were carrying the cf gene. Did you ever get tested?

(unknown)

>

>

>

>

> I have 2 babies who have cf. One who is Micheal, and he is sixteen

> months. Then there is who is 4 months. has been in the

> hospital

> three times now. He has been having a rough time. Micheal, I never even

> thought he had it. The Dr's came and told me while was in the

> hospital

> last week. It was a hard hit in the face. I have been holding up pretty

> good so far. I have put all of my faith in God. They are very

wonderful

> kids. If anyone could give me any advice please e-mail @

> SLStrunk@...

>

> Thank you,

> S

>

> _________________________________________________________________

> Get your FREE download of MSN Explorer at

http://explorer.msn.com/intl.asp

>

>

>

[Guest guest]

,

Some kids you can actually see the salt crystals, although with Eilish you

cant. But salt supplements are automatically for the summer months here.

Eilish does taste very salty in the summer but she receives her supplements

and we have never had a blood test for her elctrolytes back that were not

great.

(unknown)

>

>

> I was wanting to know if anyone could tell me how you know when your

child

> is loosing salt? I have ,who is almost 4 months and Micheal who is

16

> months today both with cf.

>

> Thank you,

> S

>

> _________________________________________________________________

> Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

>

>

>

> PLEASE do not post religious emails to the list.

>

>

> -------------------------------------------

>

>

> The opinions and information exchanged on this list should

> IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

>

> --------------------------------------------------

>

>

>

[Guest guest]

shannon my son always gets a white powdery crust around his face and becomes

very tired. he has always done that. claire

>

>Reply-To: cfparents

>To: cfparents

>Subject: (unknown)

>Date: Fri, 21 Sep 2001 22:08:03 -0500

>

>

>

> I was wanting to know if anyone could tell me how you know when your

>child

>is loosing salt? I have ,who is almost 4 months and Micheal who is 16

>months today both with cf.

>

> Thank you,

> S

>

>_________________________________________________________________

>Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

>

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

[Guest guest]

My little guy is 9 months old and was admitted for three days last month

because his electrolytes were off.

He was cranky and not his usual self. He was not interested in eating and

over a period of a month lost about a pound and a half.

Those were the only real signs. - sometime he would have dark circles under

his eyes. Looking back he wanted to sleep a bit more than he does now.

Those were the only real signs for us because it took place over an extended

period of time. If it had happened at once he would have appeared to be

more sick, temperature etc.

Pat

father of a son wcf

(unknown)

>

>

> I was wanting to know if anyone could tell me how you know when your

child

> is loosing salt? I have ,who is almost 4 months and Micheal who is

16

> months today both with cf.

>

> Thank you,

> S

>

> _________________________________________________________________

> Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

>

>

>

> PLEASE do not post religious emails to the list.

>

>

> -------------------------------------------

>

>

> The opinions and information exchanged on this list should

> IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

>

> --------------------------------------------------

>

>

>

[Guest guest]

You can increase the calorie content of the formula by reducing the

dilution

The usual dilution is one can of concentrate and one can of water.

If you reduce the water to 1/3 you get 30cal per oz formula. I got the

recipe from our pediatrician. I also have a recipe which includes

polycose but have never used it.

To help Cameron put on some extra weight we also give him mini-go (made

by yoplait) it is a fresh cheese but looks like yogurt. It has about

6.8% milk fat. There are about 85 calories in 2 oz. This was also

recommended by the Dr. I'm not sure at what age they will let

have the milk product.

Let me know if you want the recipes. I have them at home.

Pat

Father of Cameron wcf.

> (unknown)

>

>

>

>

> Hello,

>

> I wa swandering if anyone could give me some advice.

> , who will be 4

> months on Sept 30 weighed 8lbs 11.5ozs today. He was 6bls

> and 1oz at birth.

> He has not lost any weight. He goes back to his lung Dr in

> the moring. I

> am really worried about him. He eats good he does not spit up

> alot. I have

> been giving him cereal in his formula 2times a day. He had a

> feeding tube in

> and the Dr's took it out. If anyone could give me any advice

> please do.

>

> Thank you,

> and Micheal Both w/cf Dillon adn wo/cf

>

> _________________________________________________________________

> Get your FREE download of MSN Explorer at

> http://explorer.msn.com/intl.asp

>

>

> ------------------------

>

[Guest guest]

Dear ,

We started Connor (10mths) on his enzymes and applesauce when he was four 1/2

weeks. He didn;t like it at first but didn't have much choice in getting used to

it. He hadn't been putting on any weight until we started them but afterwards he

couldn't put it on quick enough. Persevere as it sounds like needs them to

gain that weight. Maybe you could wash them down with the bottle as soon as you

get them in his mouth. That used to work for us.

Good Luck!

Kristy. mummy to Connor 10mths wcf, Jayden 2&10mths wocf

[Guest guest]

Cameron has had enzymes in apple sauce since he was two weeks old. If you

work at it a while he'll get the hang of it. You'll need to check his mouth

to make sure that all of the beads are out - if they stay in his mouth they

will cause sores.

Pat

Father of Cameron 9 months

(unknown)

>

>

> Kim,

>

> I have on enfamil pregestimil formula. He gets rice cereal. No he

is

> not on enzymes I tried those and he would not have it. I would put them on

a

> spoon with some apple sauce baby food he hated that. He maybe still to

> little to know what a spoon is. I am thinking of giving it anthor try. I

> hope they do not put him back in the hospital. Our Dr's are so far away

> from home that I have to get up extra eary just to get things ready. He

> spits his acid reflex med out at me now we are having a hard time with

that.

> I am thnkful that I have a good cf support group. I guess I will talk

to

> you later.

>

> S

>

> _________________________________________________________________

> Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

>

>

>

> PLEASE do not post religious emails to the list.

>

>

> -------------------------------------------

>

>

> The opinions and information exchanged on this list should

> IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

>

> --------------------------------------------------

>

>

>

[Guest guest]

-

As soon as we started cereal with my son, we added Polycose powder to it.

It is a sugary powder that adds extra calories. We also went to Progestimil

formula. It is in it's simplist form and easier for digestion. My sister

was also on this formual 25 years ago. You may want to ask your doctor

about adding the extra calories and another formula.

Melinda - son 2.5 yrs wcf and sister 25 yrs wcf

(unknown)

Hello,

I wa swandering if anyone could give me some advice. , who will be

4

months on Sept 30 weighed 8lbs 11.5ozs today. He was 6bls and 1oz at

birth.

He has not lost any weight. He goes back to his lung Dr in the moring. I

am really worried about him. He eats good he does not spit up alot. I have

been giving him cereal in his formula 2times a day. He had a feeding tube

in

and the Dr's took it out. If anyone could give me any advice please do.

Thank you,

and Micheal Both w/cf Dillon adn wo/cf

_________________________________________________________________

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[Guest guest]

The lack of enzymes may have something to do with the lack of weight gain.

I always used the smallest baby spoon and the smallest amount of apple sauce

baby food and quickly followed by the bottle and all went down - hope this

helps.

Melinda - son 2.5 wcf and sister 25 wcf

(unknown)

Kim,

I have on enfamil pregestimil formula. He gets rice cereal. No he

is

not on enzymes I tried those and he would not have it. I would put them on

a

spoon with some apple sauce baby food he hated that. He maybe still to

little to know what a spoon is. I am thinking of giving it anthor try. I

hope they do not put him back in the hospital. Our Dr's are so far away

from home that I have to get up extra eary just to get things ready. He

spits his acid reflex med out at me now we are having a hard time with

that.

I am thnkful that I have a good cf support group. I guess I will talk

to

you later.

S

_________________________________________________________________

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[Guest guest]

Pat,

Great catch on advising of the sores. I didn't realize this

for several weeks until started acting like he didn't want to

eat or put anything in his mouth. I investigated and low & behold,

he had little red sores all over in his mouth - on his tongue, in his

cheeks... I felt SO horrible! Once I started making sure he had

swallowed all the enzymes, we didn't have any more problems.

Angi

Mom of 3, 2 wcf

> You'll need to check his mouth to make sure that all of the beads

are out - if they stay in his mouth they will cause sores.

[Guest guest]

In a message dated 10/5/01 9:10:53 PM Mountain Daylight Time,

SLStrunk@... writes:

> I got to come home and rest for awhile. , is back in the hospital. He

> is now 4 months and he is up to 8lbs and 14ozs. I have worried myself

sick

> about that baby. He just coughs until he turns blue. They have been

> sucking alot of mucus out of him. He goes threw his surgery next week.

> They are going to put a feeding tube in his stomach and look at his lungs

> they think that they are scared. I have cried so much for the past two

> days. I am scared. I hope someone can relate to this message.

> Thanks,

> S Micheal 16months w/cf 4 months w/cf

Hugs, prayers, and powerful thoughts going your way, .

Dixie

[Guest guest]

(((HUGS))) . I have a with cf too...he is one year old. My boy

isn't that sick at the moment, but I can relate to you being scared. It's

okay to be scared, just know that. It's okay to cry. This is your little

baby...how terrifying that he is going through so much.

You're a strong mom. Hang in there and hug that little boy for me...make

that both of your little boys.

mama to 1 yo w/CF and 3 yo woCF

> From: " Strunk " SLStrunk@...

>

> Hello,

>

> I got to come home and rest for awhile. , is back in the hospital. He

> is now 4 months and he is up to 8lbs and 14ozs. I have worried myself sick

> about that baby. He just coughs until he turns blue. They have been

> sucking alot of mucus out of him. He goes threw his surgery next week.

> They are going to put a feeding tube in his stomach and look at his lungs

> they think that they are scared. I have cried so much for the past two

> days. I am scared. I hope someone can relate to this message.

> Thanks,

> S Micheal 16months w/cf 4 months w/cf

[Guest guest]

I think we can all relate to this. This is something we all fear and

worry about. Please know that our thoughts are with you and that we hope

pulls through surgery fine and gets past this rough period quickly.

I'm not sure if any of our words can truly provide you the comfort or

strength to get through this. Our thoughts are with you, and your

family.

- mother of Emma 15 months w/cf and Isabelle 3 years wo/cf

On Fri, 05 Oct 2001 21:41:00 -0500 " Strunk "

SLStrunk@...> writes:

>

>

>

> Hello,

>

> I got to come home and rest for awhile. , is back in the

> hospital. He

> is now 4 months and he is up to 8lbs and 14ozs. I have worried

> myself sick

> about that baby. He just coughs until he turns blue. They have

> been

> sucking alot of mucus out of him. He goes threw his surgery next

> week.

> They are going to put a feeding tube in his stomach and look at his

> lungs

> they think that they are scared. I have cried so much for the past

> two

> days. I am scared. I hope someone can relate to this message.

> Thanks,

> S Micheal 16months w/cf 4 months w/cf

>

> _________________________________________________________________

> Get your FREE download of MSN Explorer at

> http://explorer.msn.com/intl.asp

>

>

> PLEASE do not post religious emails to the list.

>

>

> -------------------------------------------

>

>

> The opinions and information exchanged on this list should

> IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

> TREATMENTS.

>

> --------------------------------------------------

>

>

>

[Guest guest]

,

So sorry to hear about being in hsp. I hope he recovers soon. Its

hard when they are that small and you have two littlies. Hope your getting

some rest.

(unknown)

>

>

> >

> >

> >

> > Hello,

> >

> > I got to come home and rest for awhile. , is back in the

hospital.

> He

> > is now 4 months and he is up to 8lbs and 14ozs. I have worried myself

> sick

> > about that baby. He just coughs until he turns blue. They have been

> > sucking alot of mucus out of him. He goes threw his surgery next week.

> > They are going to put a feeding tube in his stomach and look at his

lungs

> > they think that they are scared. I have cried so much for the past two

> > days. I am scared. I hope someone can relate to this message.

> > Thanks,

> > S Micheal 16months w/cf 4 months w/cf

> >

> > _________________________________________________________________

> > Get your FREE download of MSN Explorer at

http://explorer.msn.com/intl.asp

> >

> >

> > PLEASE do not post religious emails to the list.

> >

> >

> > -------------------------------------------

> >

> >

> > The opinions and information exchanged on this list should

> > IN NO WAY

> > be construed as medical advice.

> >

> > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

> TREATMENTS.

> >

> > --------------------------------------------------

> >

> >

> >