(No subject)

[Guest guest]

Jen,

That is exactly how I see it too.

Mom to Elliot

11mths wcf

[Guest guest]

,

You just confirmed my long standing belief that some things happen

for a reason, though we may not know the reason;.....perhaps you were

meant to not make that appt.

Jen

> Melinda,

>

> I always remember missing a genetic counselling appointment that

was

> scheduled because we were running behind at the Doctors office

having our

> first ultrasound. The appointment was scheduled because I was 37

when we got

> pregnant with Elliot( I don't even know now if they would have

tested us as

> carriers then)

>

> We were in the middle of moving from Canada to the US so the

counselling

> never took place and was never rescheduled.

>

> I could never imagine our lives without Elliot and I do not think

that it is

> selfish of me to think that way. I hope that you enjoy your

pregnancy and

> allow yourself the joy that this little one will bring to your

family.

>

>

> Mom to Elliot

> 11mths wcf

>

>

>

[Guest guest]

As I said in last post. Congrats & thank you... Also, my " best " wishes

you asked for are on their way for a great visit at CHOP tomorrow.

LOVE & HUGS, grandmomBEV

(no subject)

We had our 11 annual benefit for cf research on sat.. it went

great...Also

please say a prayer for my youngest she is going to CHOP in the morning.

for

her clinic... thanks again patty

[Guest guest]

Hi Patty,

Sorry to hear that your daughters PFTs are down, hasnt done these yet

so I am not sure exactly what that means, but I am sure it could be better.

Just sending happy thoughts your way and your daughters.

Take care,

, mommy of 4, (17), and now a permitted driver, oh I am either

getting old or just prematurely gray, Caleb (7) and still bossing the others

around thinking he is the man of the house even though his daddy is home,

(6) she is gonna be my artist and support her momma, since none of them

are ever leaving home so they say, and (2 1/2) I believe he will be a

baseball player, has the best throw of anyone I know, and I have the bruises

to prove it, a big ole attitude, bright blue eyes and a devlish little grin,

oh yeah, and he has CF.

[Guest guest]

Sorry your sweetie's number were down, but that cipro will get them back

up. tell her to do the kitty smile..Love & hugs, to each of you all

GrandmomBEV

(no subject)

My youngest had clinic today.. her PFT's are down alittle.. she was put on

Cipro..if no chance in a week. i have to call back.. they also increases her

treatments...so she is real happy right now... patty, mom of 2 daughters

withcf

[Guest guest]

, thank you so much for your replay... when her older sister came home

last night.. she spoke to here.. her sister told her that yes it does suck

having cf.. but at we can fight it.. and she also said to her remember we

always said we were not going to let cf get us .. that we are a team...they

talk for hours and would not let me in...but i was so happy to have the

help... i also told her that she might want someone else toi talk to ...

patty

[Guest guest]

Hi Patty,

I'm still waiting for my girls to hit that age. I have heard though

from many different people that this is common in teens. My

pharmacist told me that she knows a couple of teens with cf going

through the same kind of thing. One is even refusing to take her meds

because she is tired of fighting and not getting better. Maybe your

daughter would benefit from talking things over with a young adult

with cf. Talking it out with someone who has been there might help.

mom of 3, 2wcf

> My daughter is 16 ,, and always has so much go..... She is a black

belt in

> karate....and playsLacrosse .. now she is getting where she does

not want to

> play lacrosse....She is made at the world about her cf.. she was

never like

> this... she told me she can not handle all the running .. and she

can all do

> so much.. she has me so worried... thanks so much for listen..

patty mom of 2

> daughters 20 and 16 with cf

>

>

>

[Guest guest]

Bev,

Thanks so much , you words once again have cheer me up.. ( i think you

should be a writter).. Last night was a night that i have had years ago when

my oldest daughter was 16...but when you baby comes to you no what age they

are .. and say why me.. i just want to be like everyone else my age... i want

to have no limints and i want to be able to run with having to take a

break.... she was mad... And i wanted to say i dont know why and that i am

just as mad as she is.....when this was going on last night my hubby was

working . so i went into the other room and called him... i put her on the

phone and she was crying so much....she is usually such a tuff kid.. and she

told her dad that there is only so much she can do... which broke his heart..

because she use to always say.. no CF is going to stop me... next thing we

know my hubby was working in the door and my daughters face was so cute ..

like he was her hero.....he said he just came to give her a hug and a kiss

and to tell her no matter what she decide he is behind her... it made her

night,,,,,, and mine because i was think to myself anothe r thing to handle

on my own because he is always working.... i am so sorry for going on and on

... but i need to talk to someone... patty

[Guest guest]

, that is what my husband think to ... i am willing to try anything,,,

thanks pattty

[Guest guest]

BEV: YOU ARE THE BEST... I AM THINKING OF ADOPTING YOU

lOVE PATTY

[Guest guest]

Patty,

You have given them sooo much.It is coming out now. All the words you have

and would have said.....they repeated to each other. What a blessing they

are to each other .The love you have not only GIVEN to them......You have

shown them how to GIVE to others.......each other .take a set back and

re-see that evening. Feel good inside--pride in them AND YOURSELF as you

were the first teacher they had. love is a very strong thing. They appear to

be Giants in that area.

Have a wonderful day, I hold you and your family in all my thoughts and good

wishes.

LOVE & HUGS, grandmomBEV

Re: Re: (no subject)

, thank you so much for your replay... when her older sister came home

last night.. she spoke to here.. her sister told her that yes it does suck

having cf.. but at we can fight it.. and she also said to her remember we

always said we were not going to let cf get us .. that we are a team...they

talk for hours and would not let me in...but i was so happy to have the

help... i also told her that she might want someone else toi talk to ...

patty

[Guest guest]

Patty -

I know what you mean!!! My daughter is going on 21 (March 11th) and

has had that attitude for the last 5 years. It all hit the fan when

she developed CF related diabetes. While she hasn't come out of it

totally she is doing better. It might not be a bad time to also

consider counseling for your daughter. We didn't right away and I

really regret it. We thought that it was just a part of the usual

teen rebelion along with having to adjust to the latest CF attack.

We did finally get her into counseling but it took a bout with

depression to get us to understand how serious things were. I know

that counseling isn't for everyone....but speaking from experience it

helps to sort out the serious from the usual growing pains.

, Mom to 20 (almost 21)wcf & Beth 18 wocf

-- In cfparents@y..., PamH622@A... wrote:

> My daughter is 16 ,, and always has so much go..... She is a black

belt in

> karate....and playsLacrosse .. now she is getting where she does

not want to

> play lacrosse....She is made at the world about her cf.. she was

never like

> this... she told me she can not handle all the running .. and she

can all do

> so much.. she has me so worried... thanks so much for listen..

patty mom of 2

> daughters 20 and 16 with cf

>

>

>

[Guest guest]

You are such a caring person, you go on all you want.

This experience was meant to be as so much was learned from it .

One big thing is that YOU aren't alone and your hubby is very caring. He

just gets hung up into getting $$ and worrying about his family that

way. He KNOWS what a great mom you are and trusts you to be there. II

don't think he is dumping -or -running out from it.That is another way

of praise for you. His love & faith that you can and even more so-WILL

be there. He just needs this kind of time to SHOW it as well for you to

be reassured. It appears it has worked out for each -in their own way.

You have a precious family, the

CF is just a small part that TRIES to become a BIG part. Don't let it

overshadow all the wonderful stuff you all have -LOVE.... Bless you. I

hold each of you in my thoughts .

Have a GREAT WEEKEND.

Do something , even for a minute with /to each one that says. I LOVE

YOU!!!

LOVE & HUGS, grandmomBEV

Re: Re: (no subject)

Bev,

Thanks so much , you words once again have cheer me up.. ( i think

you

should be a writter).. Last night was a night that i have had years ago

when

my oldest daughter was 16...but when you baby comes to you no what age

they

are .. and say why me.. i just want to be like everyone else my age... i

want

to have no limints and i want to be able to run with having to take a

break.... she was mad... And i wanted to say i dont know why and that i

am

just as mad as she is.....when this was going on last night my hubby was

working . so i went into the other room and called him... i put her on

the

phone and she was crying so much....she is usually such a tuff kid.. and

she

told her dad that there is only so much she can do... which broke his

heart..

because she use to always say.. no CF is going to stop me... next thing

we

know my hubby was working in the door and my daughters face was so cute

...

like he was her hero.....he said he just came to give her a hug and a

kiss

and to tell her no matter what she decide he is behind her... it made

her

night,,,,,, and mine because i was think to myself anothe r thing to

handle

on my own because he is always working.... i am so sorry for going on

and on

... but i need to talk to someone... patty

[Guest guest]

Oh goody. That sounds exciting . Best and lots of love .

I love being folks grandmom too!!

LOVE & HUGS,

grandmomBEV

Re: Re: (no subject)

BEV: YOU ARE THE BEST... I AM THINKING OF ADOPTING YOU

lOVE PATTY

[Guest guest]

Patty,

This letter just broke my heart because I know someday I will be there with

my daughters. My oldest already has anxiety attacks and I know half of it

comes from the worries of having CF. I think that was great that your hubby

was there for her too. Sometimes Dad's can just make things better with there

big arms around them. Deb A

[Guest guest]

Deb, thanks so much ... It is so true about the dad thing.. Because i am the

one who is always there with the treatment and med.. and to know that he is

there with that hug and kiss made her day... I am 37 and when my dad comes

and gives me a hug and kiss i feel like his little girl all over again..

patty

[Guest guest]

Patty,

Good luck today at clinic. I hope your daughter is feeling better soon.

Mom to Elliot

12mths wcf

[Guest guest]

, thank you so much , i will let everyone know how we made out...are

appointment is at 1 so i will be leaving now.. patty

[Guest guest]

YOU Have them !! They are abound.... I am waiting to hear the MUCH BETTER

news soon.

LOVE & HUGS,

grandmomBEV

(no subject)

My oldest daughter goes to the clinic today for check up....She has not

been

feeling well .. so please say a few prayers for her...thanks patty, mom of

2

daughters with cf...ages 20 and 16

[Guest guest]

Patty,

Sure hope all went well at clinic today for your daughter. Be sure to post

and let us know how she is doing.

Aunt B ------------- to Rodney 11 wcf

[Guest guest]

Sounds like a better than expected report. Things will be getting better

soon

LOVE & HUGS, grandmomBEV

(no subject)

My daughter clinic appointment went fairly well.. her pft's were good.. she

has a cold and has to go for a cat scan for her sinsus .. my youngest

daughter had that before and had to have a few surgrey for it .. so we will

see... how do you get to make a 16 year old see the point of the

vest....??????ready to rip my hair out. patty

[Guest guest]

Hi there, As I said before.We are really pleased your here. Now, how

about a swap of " feeding ideas " I know there are mucho many here with

some great ones. Even if they are similar, different treatment might

help . So, sound off:):)

LOVE & HUGS, grandmomBEV

To an 18 pwcf

(no subject)

Hello, my name is Tina my son, Christian, was diagnosed last year with

CF

after 9 1/2 years of treatment for asthma. I was lucky enough to be

invited

by Torsten, aka Fiona's dad in Germany, to join your list. I don't

really

have much to offer but am truly willing to listen to all the help and/or

advice on CF and how I can make my child's life the best possible. I

found

the support link from a booklet at my son's doctor's office and that was

yesterday. The help, warm feelings, advice and all that I have received

today has been like the sun shine for my spirits. I don't know how you

get

started if I give a short summary of our lives for the past year or just

learn from reading and being able to share your experiences. I have

much to

learn; one thing that I really need help on is how to get my boy to eat

more

I know some tricks but there has to be more. We are on a roller coaster

with

his weight, just when I think I am doing well he ends up back in the

hospital

and loosing weight. Thank you for your willingness to help and listen.

Tina

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]

Tina,

We contacted the local Mc's and they let my nephew's take a personal

tour of one of thier stores. The boys got to drop the fries in the vat to

cook, shoot the ketchup from the ketchup gun onto their hamburgers, turn over

the buns to warm, etc.

They just loved it-----Rodney ate " Mc's " hamburgers at home for a long

time. Being a friend of mine, the owner donated a tray of buns, box of

hamburger patties, and fries so he could make them at home. He went home and

taught his mom how to make them. And he showed her how to make the fries

too.

Then he went to taco salads, and now is on macaroni & cheese. He doesnt

stick to any kind of food for very long.

We bought the toy that makes " french fries " out of a slice of bread and he

ate bread for a while.

But, of course, his favorite food---one that he has continued to like for a

long, long time----------------is---------------------bean sprouts! lol

No nutrition or calories---just figures, huh?

Good luck with Christian.

Aunt B --------------- to Rodney 11 wcf

[Guest guest]

Hi Tina! Welcome to the list. My son, , is 18 months old and has CF as

well as alpha-1-antitrypsin deficiency, which is a separate, but also

genetic and life-threatening disease that affects the lungs and liver.

I am not sure I can help you much with the weight issue. So far is

doing okay with gaining . We do make sure to give him 6-8

small meals a day, as he seems to do better with this than with 3 or 4 large

ones.

*&~*&~*&~*&~*&~*&~*&~*&~*&~*&~&*~*&~*&~&*~*&~*&~&*

mama to , 18 months old wCF and AATD and 3 years woCF and ?AATD

> From: TBug1964@...

>

> Hello, my name is Tina my son, Christian, was diagnosed last year with CF

> after 9 1/2 years of treatment for asthma. I was lucky enough to be invited

> by Torsten, aka Fiona's dad in Germany, to join your list. I don't really

> have much to offer but am truly willing to listen to all the help and/or

> advice on CF and how I can make my child's life the best possible. I found

> the support link from a booklet at my son's doctor's office and that was

> yesterday. The help, warm feelings, advice and all that I have received

> today has been like the sun shine for my spirits. I don't know how you get

> started if I give a short summary of our lives for the past year or just

> learn from reading and being able to share your experiences. I have much to

> learn; one thing that I really need help on is how to get my boy to eat more

> I know some tricks but there has to be more. We are on a roller coaster with

> his weight, just when I think I am doing well he ends up back in the hospital

> and loosing weight. Thank you for your willingness to help and listen.

>

> Tina

[Guest guest]

What is the reason for taking it away ?Crystal mom of Ty 7yr cf