Re: Everyone is so helpful

[Guest guest]

Dear Marie,

You will be in all my special thoughts & concerns... They will help your

precious wee one get gaining soon. YES, we are all here for you & we also

need you .....Its a crazy world we're in BUT together we will beat this CF

stuff

LOVE & HUGS, grandmomBEV

Everyone is so helpful

As a new parent to this group I would like to thank you all already I

have learned and began to understand many things to come. My 5mo wcf

is currently in the Hospital for a " tune-up " now. I feel like i have

someone to talk to if i need it and that is a vast improvemnet from a

week ago. No one in the family understands and when i talk about what

we have to do every day they freak out or get sympathetic. I do not

need sympathy. I am very concerned with his condition at this time.

He is not gaining weight and then we checked in here because he was

dehydrated and down 5 precious ounces. The doc has ordered us to

concentrate the formula to 27 cals and hopefully this will help.

I have been following all the info on the g-tubes and such and am

grateful to have some knowledge for if this comes up and i fear that

it prob will. Again thanks for all the info.

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

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.

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[Guest guest]

Marie,

You are right....for the most part, most friends we had (that had

kids) sort of disappeared when the kids were dx'd with CF. We even

had one crazy mom tell us not to worry, that they would outgrow it

just likeher son outgrew his asthma by first grade!!!!! No one does

want to hear about it, it seems. when they ask, how are the kids,

they really want you to say, they are just fine...not, well, gee, this

one is on ivs right now, this one is having port surgery next week,

this one needs sinus surgery again, this one is having trouble gaining

weight and may need a gtube....this one needs o2 just to sleep at

night and may need bipap....or whatever. They just don't. It is kind

of like how parents give to the leukemia society when the mailings

come out in hopes their kids won't get it. it scares them. I don't

think they mean to disappear...but they do, unless they are doctors.

what we have found, unfortunately, is that it is the docs (and many of

our kids friends are docs due to the private school they attend) who

are not freaked out). Fortunately, our school has been willing to do

alot of parent and kid education, and the kids have actually educated

their own parents, and the parents at school have been wonderful, and

we are so very thankful for that because even alot of our church

friends have disappeared (though...some of them moved so that doesn't

count). The school even did a big fund raiser and education at same

time....there was a terrific article in newspaper and all, and that

little school raised over 7,400 bucks!!!! they called it rockin and

rollin for CF, and the preschoolers rocked in rocking chairs (and ran

around doing various things between rocking, as they rotated...) and

the kgarten and elem. kids did rollin..they were allowed to bring

bikes, skooters, and roller blades and they were divided into teams

and went around the track. loads of parents attended and it was

really cool. all organized by the PE/health teacher, and she had me

come to school and do ed. for each class, too. I brought the vest,

even a port (that had been removed from when it failed) a port

needle, neb stuff, a pat pat (the rubber thingie we use for cpt) etc

and we talked about all that CF means for the kids. course, they had

already seen nebs and enzymes. ironically, the kindergarten raised

the money and that is one of the few classes that doesn't have one of

our kids in it.....(we have all grades covered except k and third

grades last yr, next yr will have all covered but first and fourth..7

kids in one school... course, next yr Miranda moves on to middle

school, but this school has been an extreme blessing for us. and

allthe doctor parents have been a great help at birthday parties,

etc.. So the parents there are very accepting. but

elsewhere....people just don't want to know.

I am lucky at work, too, since I work with a disabled population, and

there are alot of nurses, and even the staff and all my management

staff who work for me are very accepting as well.

but the general folks out there are just not very helpful. that is

why these groups are great.

take care,

Jen

mommy of 7, 3 with CF

> As a new parent to this group I would like to thank you all already I

> have learned and began to understand many things to come. My 5mo wcf

> is currently in the Hospital for a " tune-up " now. I feel like i have

> someone to talk to if i need it and that is a vast improvemnet from a

> week ago. No one in the family understands and when i talk about what

> we have to do every day they freak out or get sympathetic. I do not

> need sympathy. I am very concerned with his condition at this time.

> He is not gaining weight and then we checked in here because he was

> dehydrated and down 5 precious ounces. The doc has ordered us to

> concentrate the formula to 27 cals and hopefully this will help.

> I have been following all the info on the g-tubes and such and am

> grateful to have some knowledge for if this comes up and i fear that

> it prob will. Again thanks for all the info.

[Guest guest]

Thank you for the words of encouragement. I hope you are right.

Marie mother to Sara 14ncf, 4 ncf, and 5mo wcf

[Guest guest]

It is good he's in. He'll feel so much better after all the iv's are done and

he'll weigh more too. Patti went in at 2 months old for her first tune up due

to a staph infection that would quit. She had also begun to lose weight. After

two weeks of meds. therapy and increased calorie formula, she was a different

baby. :-) She hasn't had to be hospitalized since then (she's 2 1/2). I hope

your child will do as well.

Dawn mom of 4, 7 and under, the youngest wcf

[Guest guest]

Jen,

Thanks for telling your story. It has only been a few months since

my son's cf diagnosis and our friends are starting to disappear. We

rarely get a phone call or an e-mail to see how things are going. I

have heard from someone who has stayed in touch, that people just

find it hard to be around us. They can't talk about trivial silly

kids stuff because we are dealing with " life and death " with our kid

everyday. We have tried to really reach out to everyone to let them

know that Zach is doing really well and is very much a normal kid.

We just did a letter writing campaign for the CFF and have gotten

many donations but very little personal contact. I thought maybe

our friends were waiting for us to come to them and now that we

have, they send a check, but do not speak to us. I love that they

are being very generous but I wish we could find a way for them to

feel more comfortable around us. It also breaks our hearts a little

to realize that some " friends " we had are really quite shallow.

Thanks - I need to vent!

Sara - mommy to Zach 17 months wcf

> > As a new parent to this group I would like to thank you all

already I

> > have learned and began to understand many things to come. My 5mo

wcf

> > is currently in the Hospital for a " tune-up " now. I feel like i

have

> > someone to talk to if i need it and that is a vast improvemnet

from a

> > week ago. No one in the family understands and when i talk about

what

> > we have to do every day they freak out or get sympathetic. I do

not

> > need sympathy. I am very concerned with his condition at this

time.

> > He is not gaining weight and then we checked in here because he

was

> > dehydrated and down 5 precious ounces. The doc has ordered us to

> > concentrate the formula to 27 cals and hopefully this will help.

> > I have been following all the info on the g-tubes and such and

am

> > grateful to have some knowledge for if this comes up and i fear

that

> > it prob will. Again thanks for all the info.