RE: Re: NEW MEMBER WHO WANTS TO SAY HELLO

[Guest guest]

Dear Gale,

Thank-you for your e-mail. Athena can swallow but she has trouble with

solids. It takes her a long time to chew and alot of times she just throws it

back

up. Alot of times the food gets stuck at the side of her mouth. They call this

pocketing. I have had her to speech therapists to get her to eat but they

usually say they can't due much more. They would just offer some suggestions. I

have spoken to other mothers who have said that it took their child years before

they would start eating more. A lady that lives near me has a daughter with

cf and she said she only started around 9. She eats more now but still has her

feeding tube. She is in high school now. My daughter was in the hospital from

the time she was born in January until the end of May. She had major surgery

the day after she was born for a blockage meconium. She then had a colostomy

which was reversed. They gave her pregestimal in her bottle and enzymes. She

started refusing her bottle so whatever she didn't drink the rest had to go into

a nose tube. She kept pulling it out so they decided to put a stomach tube in.

She had alot of reflux as a baby. They say she does not have reflux now. 2

years ago she had a hole in her stomach and had emergency surgery. She came home

with a GJ tube where I had to feed her in her intestines. That was removed

after around 6 weeks and they put the mic-key feeding tube back in. She gets her

medical drink 3 times a day that replaces the pregestimal that went in her

tube 3 times a day. She also started swallowing her enzymes. I used to mix up 9

powder ones with water and put it in her tube. So she has made progress. I

believe she will do more in time. She doe well in school and is a happy child.

Does anyone else have experience with feeding tubes? I know this was long.

Thanks for your interest.

Love,

mother of Athena wcf

[Guest guest]

I guess the new member changed their mind about saying hello - my email was

empty/blank.........

Today is my son Dylan's 7th birthday! OMG I can't believe it.. HE is SO

excited. I bought a new stove yesterday - its been installed today. I told

Dylan it was his birthday present LOL he didn't buy it either.

My other son, RYAN, has been getting pain in his chest which is SO intense he

has to take short breaths - it goes as quickly as it came......once I

mentioned it to our CF Dr. and she said GERD...any ideas?

Can't wait to get my new stove its stainless steel and black!!!!!!! Oh yea,

my husband doesn't know. I picked it out and ordered it yesterday and he is

working........this ought to be interesting. I think I will dial 911 when he

parks the car..........LOL

Rosemary in NY with 3 children (13, 10.6 and 6.6)

with CF. I have a dog named TOBI and have

coined the phrase " BREATHE DAMMIT "

[Guest guest]

Happy Birthday Dylan!!!!!!! Tell him he picked put a GREAT give tooo!!! I

will have to tell my girls that!! Maybe I will get a new stove for one of there

birthdays LOL!!!! And tell you husband to chill out!!!! If he wants home cooked

meal he better like it!!!!! Deb A

[Guest guest]

HAPPY BIRTHDAY DYLAN & MANY MORE

Rosemary, I do hope your husband will also enjoy the lovely beauty of a

stove. I love the black for a stove.you have great taste it seems.

I also love the idea of 911 when he drives in . That ought to make the

day a festive one. Maybe also the fire trucks , they are so bright &

colorful. (you might have some balloons for Dylan tied on the truck too.

I love to have birthdays made special & exciting. You will have to plan

for more guests at the party though -add the stove tech. to the list.

After all he will be installing

it..

NOW go bake a cake (or order one):) have a great time with the new

stove. If things get rough , you can bake cookies & the kids can sell

them. :) -just kidding

RIGHT!!

I hope DYLAN has a really fun day. How could he not ! ?

Now the pain that is having I sure hope & special wishes coming that

it will just " GO AWAY " and soon.

LoVE & HUGS

To all that precious family,

GrandmomBEV/Bev

Re: Re: NEW MEMBER WHO WANTS TO SAY HELLO

I guess the new member changed their mind about saying hello - my email

was

empty/blank.........

Today is my son Dylan's 7th birthday! OMG I can't believe it.. HE is

SO

excited. I bought a new stove yesterday - its been installed today. I

told

Dylan it was his birthday present LOL he didn't buy it either.

My other son, RYAN, has been getting pain in his chest which is SO

intense he

has to take short breaths - it goes as quickly as it came......once I

mentioned it to our CF Dr. and she said GERD...any ideas?

Can't wait to get my new stove its stainless steel and black!!!!!!! Oh

yea,

my husband doesn't know. I picked it out and ordered it yesterday and

he is

working........this ought to be interesting. I think I will dial 911

when he

parks the car..........LOL

Rosemary in NY with 3 children (13, 10.6 and 6.6)

with CF. I have a dog named TOBI and have

coined the phrase " BREATHE DAMMIT "

[Guest guest]

Happy Birthday---and yes, GERD, Love, n

Re: Re: NEW MEMBER WHO WANTS TO SAY HELLO

> I guess the new member changed their mind about saying hello - my email

was

> empty/blank.........

>

> Today is my son Dylan's 7th birthday! OMG I can't believe it.. HE is SO

> excited. I bought a new stove yesterday - its been installed today. I

told

> Dylan it was his birthday present LOL he didn't buy it either.

>

> My other son, RYAN, has been getting pain in his chest which is SO intense

he

> has to take short breaths - it goes as quickly as it came......once I

> mentioned it to our CF Dr. and she said GERD...any ideas?

>

> Can't wait to get my new stove its stainless steel and black!!!!!!! Oh

yea,

> my husband doesn't know. I picked it out and ordered it yesterday and he

is

> working........this ought to be interesting. I think I will dial 911 when

he

> parks the car..........LOL

>

> Rosemary in NY with 3 children (13, 10.6 and 6.6)

> with CF. I have a dog named TOBI and have

> coined the phrase " BREATHE DAMMIT "

>

>

>

[Guest guest]

you are so funny! it sounds like acid reflux, i take many meds for it, good

luck

amy mom to nathan with cf

>

>Reply-To: cfparents

>To: <cfparents >

>Subject: Re: Re: NEW MEMBER WHO WANTS TO SAY HELLO

>Date: Tue, 21 Oct 2003 13:04:35 -0700

>

>Happy Birthday---and yes, GERD, Love, n

> Re: Re: NEW MEMBER WHO WANTS TO SAY HELLO

>

>

> > I guess the new member changed their mind about saying hello - my email

>was

> > empty/blank.........

> >

> > Today is my son Dylan's 7th birthday! OMG I can't believe it.. HE is

>SO

> > excited. I bought a new stove yesterday - its been installed today. I

>told

> > Dylan it was his birthday present LOL he didn't buy it either.

> >

> > My other son, RYAN, has been getting pain in his chest which is SO

>intense

>he

> > has to take short breaths - it goes as quickly as it came......once I

> > mentioned it to our CF Dr. and she said GERD...any ideas?

> >

> > Can't wait to get my new stove its stainless steel and black!!!!!!! Oh

>yea,

> > my husband doesn't know. I picked it out and ordered it yesterday and

>he

>is

> > working........this ought to be interesting. I think I will dial 911

>when

>he

> > parks the car..........LOL

> >

> > Rosemary in NY with 3 children (13, 10.6 and 6.6)

> > with CF. I have a dog named TOBI and have

> > coined the phrase " BREATHE DAMMIT "

> >

> >

> >

[Guest guest]

Amy; I guess we are sort of used to being, well, sort of

" rfluxive! " Love to you and to yours,

n Rojas

Re: Re: NEW MEMBER WHO WANTS TO SAY HELLO

> >

> >

> > > I guess the new member changed their mind about saying hello - my

email

> >was

> > > empty/blank.........

> > >

> > > Today is my son Dylan's 7th birthday! OMG I can't believe it.. HE is

> >SO

> > > excited. I bought a new stove yesterday - its been installed today.

I

> >told

> > > Dylan it was his birthday present LOL he didn't buy it either.

> > >

> > > My other son, RYAN, has been getting pain in his chest which is SO

> >intense

> >he

> > > has to take short breaths - it goes as quickly as it came......once I

> > > mentioned it to our CF Dr. and she said GERD...any ideas?

> > >

> > > Can't wait to get my new stove its stainless steel and black!!!!!!!

Oh

> >yea,

> > > my husband doesn't know. I picked it out and ordered it yesterday and

> >he

> >is

> > > working........this ought to be interesting. I think I will dial 911

> >when

> >he

> > > parks the car..........LOL

> > >

> > > Rosemary in NY with 3 children (13, 10.6 and 6.6)

> > > with CF. I have a dog named TOBI and have

> > > coined the phrase " BREATHE DAMMIT "

> > >

> > >

> > >

[Guest guest]

Rosemary,

Don't know why Dylan wouldn't like a stove for his present! Hope he

has/had a wonderful day.

Ah what your husband doesn't know ............. Only if he cooks may he

notice something is different in the kitchen.

Re: Re: NEW MEMBER WHO WANTS TO SAY HELLO

I guess the new member changed their mind about saying hello - my email

was

empty/blank.........

Today is my son Dylan's 7th birthday! OMG I can't believe it.. HE is

SO

excited. I bought a new stove yesterday - its been installed today. I

told

Dylan it was his birthday present LOL he didn't buy it either.

My other son, RYAN, has been getting pain in his chest which is SO

intense he

has to take short breaths - it goes as quickly as it came......once I

mentioned it to our CF Dr. and she said GERD...any ideas?

Can't wait to get my new stove its stainless steel and black!!!!!!! Oh

yea,

my husband doesn't know. I picked it out and ordered it yesterday and

he is

working........this ought to be interesting. I think I will dial 911

when he

parks the car..........LOL

Rosemary in NY with 3 children (13, 10.6 and 6.6)

with CF. I have a dog named TOBI and have

coined the phrase " BREATHE DAMMIT "

[Guest guest]

i haven't posted in a while, today is katelyn's 4th birthday (the 1st since the

diagnosis). it just makes every birthday from now on even more special. we are

having a party for her and her sister ashley sunday at chuck e. cheese. we just

had a good check up which makes things even better. i wish everyone the best and

those that aren't doing well are in my prayers.beth bennett, mother of amanda

101/2 wocf, ashley 7 (almost) wocf, and katelyn 4 today--happy birthday!!! wcf.

Baxter wrote:Rosemary,

Don't know why Dylan wouldn't like a stove for his present! Hope he

has/had a wonderful day.

Ah what your husband doesn't know ............. Only if he cooks may he

notice something is different in the kitchen.

Re: Re: NEW MEMBER WHO WANTS TO SAY HELLO

I guess the new member changed their mind about saying hello - my email

was

empty/blank.........

Today is my son Dylan's 7th birthday! OMG I can't believe it.. HE is

SO

excited. I bought a new stove yesterday - its been installed today. I

told

Dylan it was his birthday present LOL he didn't buy it either.

My other son, RYAN, has been getting pain in his chest which is SO

intense he

has to take short breaths - it goes as quickly as it came......once I

mentioned it to our CF Dr. and she said GERD...any ideas?

Can't wait to get my new stove its stainless steel and black!!!!!!! Oh

yea,

my husband doesn't know. I picked it out and ordered it yesterday and

he is

working........this ought to be interesting. I think I will dial 911

when he

parks the car..........LOL

Rosemary in NY with 3 children (13, 10.6 and 6.6)

with CF. I have a dog named TOBI and have

coined the phrase " BREATHE DAMMIT "