RE: I've finally found my way here

[Guest guest]

GOOOOOOOOOOOOOOOOOOOOOOOOOOOO, ; you can do it, and we are

all pulling for you, mothers, fathers, older kids--the whole crowd, aunts,

uncles,

grandparents, even greatgrandparents--we're all for you! Thank you for

posting to

this wonderful list,

n Rojas

[Guest guest]

,

So glad you found this group. It is wonderful and VERY supportive and

informative. must make you very happy. No matter how tough it is or

when ever you feel you can't go on, remember that he fought to be here for

you and you need to be strong. Good luck and god bless.

mom to jeremiah 18mo wcf and brenna 5yrs wocf

>

>Reply-To: cfparents

>To: cfparents

>Subject: I've finally found my way here

>Date: Tue, 30 Jan 2001 02:56:20 -0000

>

>Hi

>

>My name is and my husband name is . We are from the Boston

>area. We have 2 beautiful children, (tori) 3 1/2 nocf and

> 8 1/2 months old.

> was born a miracle to us. He was taken emergently after I had

>noticed no fetal movement. He was born with meconium illius (bowel

>obstruction) and had a stroke. The dr's didnt think he would survive.

>

>After a grueling 5 1/2 month stay in the hospital( which included 2

>surgeries, 3 central lines, too many blood infections, phnemonia and

>months on TPN, amongst other things) we have our precious boy home.

>And we are starting to pick up the pieces of our lives.

>

>I'm a very much in-control person, and decided the minute I saw

>, 3 days after he was born. (he was transfered from the

>birthing hospital to Children's) I knew that there was no way I could

>fall apart here. I needed to be strong and take care of this precious

>life. My heart cries everyday with fear, but I will not shed one tear

>for I feel that I am blessed. I am by no means a religious person,

>but there has to be a reason god has sent me this child. So I intend

>to make all our days happy ones.

>

> I have built a wall around my family.

>At times I feel like a mother Lion protecting her cubs, I guess a few

>people feel as if I've bitten their heads off! lol

>I cant take any chances with my children. I question and keep

>questioning until I understand. I spend alot of time doing research

>on CF and exploring all options out there.

>But there is no better learing tool other than the actual lives that

>are living their life with CF. So I look forward to learning and

>hearing all I can. Because the best tool we have is our minds and the

>ablility to make the best decisions we can for our children.

>

> Stein

>

_________________________________________________________________

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

[Guest guest]

Hi ,

Glad to have you on the list. My name is Deborah and i have a 21/2

yr. old daughter with c.f. Your experience with your little one is

very similar to ours. beth was born 51/2 weeks premature by

ceasarian with a meconium ileus-she was taken to children's hospital

within an hour and had surgery the next day to repair the intestine.

She spent 3 months in the hospital-she also has a blood infection,

aspirated pneumonia, a nissan fundoplucation for reflux,etc, etc.

I too keep her as sheltered as I can now-the doctors told us the

first two years are very critical healthwise as they build up their

immunites-My beth had Synagis shots for her first two winters to

help fend off RSV. She has done fairly well handling her colds and

has not been hospitalized for abour 20 months(she is fighting a long

standing cold right now though)

Anyway you are right-being able to hear of others experiences and

learn all the info. you can is great. I don't post here very often

by I try to read everyones posts as there is always some little bit

of info. I had not heard of or thought about before. Getting

encouragement from others with similar experiences is important and I

hope you learn alot here. Keep being the best Mother Lion you can

be!! : )

Deborah-homeschooling mother to three-Abigail 9ncf, 5ncf, and

beth 21/2 cf and the light of my life

> Hi

>

> My name is and my husband name is . We are from the Boston

> area. We have 2 beautiful children, (tori) 3 1/2 nocf and

> 8 1/2 months old.

> was born a miracle to us. He was taken emergently after I

had

> noticed no fetal movement. He was born with meconium illius (bowel

> obstruction) and had a stroke. The dr's didnt think he would

survive.

>

> After a grueling 5 1/2 month stay in the hospital( which included 2

> surgeries, 3 central lines, too many blood infections, phnemonia

and

> months on TPN, amongst other things) we have our precious boy home.

> And we are starting to pick up the pieces of our lives.

>

> I'm a very much in-control person, and decided the minute I saw

> , 3 days after he was born. (he was transfered from the

> birthing hospital to Children's) I knew that there was no way I

could

> fall apart here. I needed to be strong and take care of this

precious

> life. My heart cries everyday with fear, but I will not shed one

tear

> for I feel that I am blessed. I am by no means a religious person,

> but there has to be a reason god has sent me this child. So I

intend

> to make all our days happy ones.

>

> I have built a wall around my family.

> At times I feel like a mother Lion protecting her cubs, I guess a

few

> people feel as if I've bitten their heads off! lol

> I cant take any chances with my children. I question and keep

> questioning until I understand. I spend alot of time doing research

> on CF and exploring all options out there.

> But there is no better learing tool other than the actual lives

that

> are living their life with CF. So I look forward to learning and

> hearing all I can. Because the best tool we have is our minds and

the

> ablility to make the best decisions we can for our children.

>

> Stein

[Guest guest]

welcome to a wonderful list and lots of fun and information. i love your

attutude..you will make a great mom......especially a cf mom!!

love & hugs,

grandmombev

I've finally found my way here

Hi

My name is and my husband name is . We are from the Boston

area. We have 2 beautiful children, (tori) 3 1/2 nocf and

8 1/2 months old.

was born a miracle to us. He was taken emergently after I had

noticed no fetal movement. He was born with meconium illius (bowel

obstruction) and had a stroke. The dr's didnt think he would survive.

After a grueling 5 1/2 month stay in the hospital( which included 2

surgeries, 3 central lines, too many blood infections, phnemonia and

months on TPN, amongst other things) we have our precious boy home.

And we are starting to pick up the pieces of our lives.

I'm a very much in-control person, and decided the minute I saw

, 3 days after he was born. (he was transfered from the

birthing hospital to Children's) I knew that there was no way I could

fall apart here. I needed to be strong and take care of this precious

life. My heart cries everyday with fear, but I will not shed one tear

for I feel that I am blessed. I am by no means a religious person,

but there has to be a reason god has sent me this child. So I intend

to make all our days happy ones.

I have built a wall around my family.

At times I feel like a mother Lion protecting her cubs, I guess a few

people feel as if I've bitten their heads off! lol

I cant take any chances with my children. I question and keep

questioning until I understand. I spend alot of time doing research

on CF and exploring all options out there.

But there is no better learing tool other than the actual lives that

are living their life with CF. So I look forward to learning and

hearing all I can. Because the best tool we have is our minds and the

ablility to make the best decisions we can for our children.

Stein

***********************

This is a secular list.

***********************

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.

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

Our webpage is at http://www.eohio.net/malbright/cfparents.htm

_________________________________________________

Post message: cfparentsegroups

Subscribe: cfparents-subscribeegroups

Unsubscribe: cfparents-unsubscribeegroups

List owner: cfparents-owneregroups

_________________________________________________

WE HAVE A CHAT PAGE!!!

/chat/cfparents

_________________________________________________

[Guest guest]

, I agree; we are glad that you are here and feel that it will help

, too,

at least we can hope hard for that, appreciatively,

n Rojas

[Guest guest]

, after reading your post I see where got the fight to

overcome such enormous hurdles at so tender an age! I felt exactly

the same way when we were told that my daughter Rina, at seven weeks

old, was in multi-system failure and would not survive the weekend.

I believe your loving and positive attitude is what gave the

strength to carry on - knowing there was something to live for

despite the pain and fear. Keep it up! And take heart. After her

incredibly difficult start Rina is a happy and delightful toddler of

2 1/2 who loves her brother and sisters, goes to playschool and

generally never stops running!

Rina had a similar start to : meconium ileus, bowel rupture,

several more surgeries, Hickman placements, many systemic infections,

long intubation, TPN etc. In all we spent the first seven months of

her life at B.C. Children's Hospital (1/2 in ICU and 1/2 on the

ward). Although it has been a long and slow process, Rina is at the

stage where her prognosis is no different from that of any other

child with cf. There are some issues you may face as a result of

's early and long hospitalization - drop me a line off-list and

I'll fill you in.

Welcome to the list and congratulations on getting your boy home!

Max

[Guest guest]

Welcome to the list.....

I, too, have a and feel very blessed by him. He had alot of problems

in his first year of life, but his were caused by bradycardia and apnea

(apparently a result of my having positive anticardiolipen antibodies...) and

we almost lost him at daycare once, so I am so happy to say that he turned 5

yesterday. His CF is well under control, with all the current treatments and

our doc is very aggressive in his care.

We also have other children, as you will read in my signature...... two of

whom have Cf. mallory has had more problems, but we are still banking on her

improving as her airways grow.

Take care, and welcome to the list...

Jen

Mommy of 7, including ph 19 months with CF, Mallory 3 with CF, RAD, GERD,

OSA, port-a-cath; 4 with CF, port-a-cath; 6, Miranda 9, Brittany

7 yo foster daughter with Type 1 diabetes (juvenile diabetes) 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]

Hi

I'm not sure how you respond to these messages, so tell me if i'm

doing it wrong.

Deborah, are you from the Boston area? Joshy gets the monthly shots

to ward off RSV also.

Glad to hear your babe has stayed out of the hospital!

Hope her cold gets better soon.

Stein

> > Hi

> >

> > My name is and my husband name is . We are from the

Boston

> > area. We have 2 beautiful children, (tori) 3 1/2 nocf

and

> > 8 1/2 months old.

> > was born a miracle to us. He was taken emergently after I

> had

> > noticed no fetal movement. He was born with meconium illius

(bowel

> > obstruction) and had a stroke. The dr's didnt think he would

> survive.

> >

> > After a grueling 5 1/2 month stay in the hospital( which included

2

> > surgeries, 3 central lines, too many blood infections, phnemonia

> and

> > months on TPN, amongst other things) we have our precious boy

home.

> > And we are starting to pick up the pieces of our lives.

> >

> > I'm a very much in-control person, and decided the minute I saw

> > , 3 days after he was born. (he was transfered from the

> > birthing hospital to Children's) I knew that there was no way I

> could

> > fall apart here. I needed to be strong and take care of this

> precious

> > life. My heart cries everyday with fear, but I will not shed one

> tear

> > for I feel that I am blessed. I am by no means a religious

person,

> > but there has to be a reason god has sent me this child. So I

> intend

> > to make all our days happy ones.

> >

> > I have built a wall around my family.

> > At times I feel like a mother Lion protecting her cubs, I guess a

> few

> > people feel as if I've bitten their heads off! lol

> > I cant take any chances with my children. I question and keep

> > questioning until I understand. I spend alot of time doing

research

> > on CF and exploring all options out there.

> > But there is no better learing tool other than the actual lives

> that

> > are living their life with CF. So I look forward to learning and

> > hearing all I can. Because the best tool we have is our minds and

> the

> > ablility to make the best decisions we can for our children.

> >

> > Stein