Re: new cf mom to your message board

[Guest guest]

,

Welcome to the parents CF board. You will find great support and caring here.

I am the youngest of 7 siblings and I have CF. My middle sister also has CF.

I am 39 and she is 48. She also has 4 children of her own!!

I did many nebullizer treatments in my day. We had many " distractions " while

doing it. Try singing as a family, watching TV, playing the radio, coloring,

computer, you reading stories from books that you pick out at the library for

" special medicine time only " . You can help make this time not so dreaded but

a special time for you and family.

My sister and I have had lung transplants now, so we don't have that " special

family " time anymore in our lives.

My best to you and your son and your entire family.

Joanne Schum

> I have three boys 13, 11,and 9years old. The youngest has cf. He has been

> very sick ,he has problems with lungs and his bowels.He has been in the

> hospital at least once a year since he was three before that he was there

> at least four times a year. The doctor just put him on tobi two months ago

> and he hates the time it takes . I try to make it fun and tell him it will

> keep him out of the hospital. My other boys worry about when they

> saw him so sick this summer,he was on the aerosol machine alot more then he

> every was before.He can not go all night with out it sometimes. So it is

> really nice to hear some other people talking about their lives with cf.

> mom of 3, 2wocf, and 1wcf

[Guest guest]

OK--Welcome, and kids--we hope that you will like our list

as much as we do!

Love,

n

[Guest guest]

OK--Welcome, and kids--we hope that you will like our list

as much as we do!

Love,

n

[Guest guest]

Cheryl,

I understand some of what you are talking about. Wyatt my 7yo wcf

is nuts. He worries himself about EVERYTHING. The things he says

sound like an adult talking. He's really acting up lately. THat's why

I started trying to find him a penpal with cf and how I found this

group. Hunter my 2yo wocf is a maniac!! He is so hyper and all boy.

He jumps, climbs, yells, wrestles, runs (away from me all of the

time) He wears me out and wears on my last nerve. I am looking

forward to returning to work when we move back to california.

I think it's good you scheduled yourself a therapy appointment. I

have gone through a severe depression.I think I've had it for a long

time but always chalked it off. I don't have time to be depressed. My

husband was deployed and I had Wyatt to take care of. Then we came to

Hawaii (and NO it's NOT paradise believe it or not) and I think since

my hubby is home(3yrs shore duty-now over)I finally gave myself

permission to feel it and give into it. So I was crying every day and

very angry. Finally last Christmas I had a big ol breakdown and went

to the doctor. They put me on Celexa and immediately i felt the

irritation and anger dissipate. A month later I FINALLY got an

appointment and have been going every 2-4 weeks depending on

schedule to talk to a psychaiatrist. It's really helping just to vent

about everything. I hope you find yours helpful too.

Anyways, just thought I'd share so you know you aren't alone or the

only one w/ those feelings. (can you tell I'm having a bad day?)

Lots of love, Christy mom of wyatt 7wcf and Hunter 2.5 wocf

with cf. My middle boy, , has just gone to visit his gramma in

Windsor for a few days. This gives his mom here a little break. I

am not sure I will know what to do. He is such a handful right now.

He's busy,busy,busy..... climbing, jumping all over his baby brother.

He is crying for attention, I am trying to give him as much as he

needs but it doesn't seem like enough to him. He pushes all my

buttons.

>

> I have called to book therapy for myself. I am so angry, I don't

want to be angry anymore. I just want to try and enjoy my life and

my kids,ya know. They don't have any appt. for me until NOv.12th.

>

> Guess this site will be my therapy until then.

> Cheryl,momto3 boys, Zac 6 yrs. wocf, Jake 2yrs.wocf, Matty 9 mo. wcf

[Guest guest]

Cheryl,

I understand some of what you are talking about. Wyatt my 7yo wcf

is nuts. He worries himself about EVERYTHING. The things he says

sound like an adult talking. He's really acting up lately. THat's why

I started trying to find him a penpal with cf and how I found this

group. Hunter my 2yo wocf is a maniac!! He is so hyper and all boy.

He jumps, climbs, yells, wrestles, runs (away from me all of the

time) He wears me out and wears on my last nerve. I am looking

forward to returning to work when we move back to california.

I think it's good you scheduled yourself a therapy appointment. I

have gone through a severe depression.I think I've had it for a long

time but always chalked it off. I don't have time to be depressed. My

husband was deployed and I had Wyatt to take care of. Then we came to

Hawaii (and NO it's NOT paradise believe it or not) and I think since

my hubby is home(3yrs shore duty-now over)I finally gave myself

permission to feel it and give into it. So I was crying every day and

very angry. Finally last Christmas I had a big ol breakdown and went

to the doctor. They put me on Celexa and immediately i felt the

irritation and anger dissipate. A month later I FINALLY got an

appointment and have been going every 2-4 weeks depending on

schedule to talk to a psychaiatrist. It's really helping just to vent

about everything. I hope you find yours helpful too.

Anyways, just thought I'd share so you know you aren't alone or the

only one w/ those feelings. (can you tell I'm having a bad day?)

Lots of love, Christy mom of wyatt 7wcf and Hunter 2.5 wocf

with cf. My middle boy, , has just gone to visit his gramma in

Windsor for a few days. This gives his mom here a little break. I

am not sure I will know what to do. He is such a handful right now.

He's busy,busy,busy..... climbing, jumping all over his baby brother.

He is crying for attention, I am trying to give him as much as he

needs but it doesn't seem like enough to him. He pushes all my

buttons.

>

> I have called to book therapy for myself. I am so angry, I don't

want to be angry anymore. I just want to try and enjoy my life and

my kids,ya know. They don't have any appt. for me until NOv.12th.

>

> Guess this site will be my therapy until then.

> Cheryl,momto3 boys, Zac 6 yrs. wocf, Jake 2yrs.wocf, Matty 9 mo. wcf

[Guest guest]

I just had to respond to your message to let you know that I too have 3 boys and

my youngest is the one with cf. And his name is . What are your other

boys' names?

Re: Re: Jeanne - adoption

In a message dated 10/27/2002 10:03:43 PM Central Standard Time,

ron88jen@... writes:

>

> Jeanne,

> Personally, I don't think so. Though, as adoptive parents also,

> somtimes I have to wonder if we were nuts....

> In our case, we adopted two kids that were originally supposed to be 6

> week placements....we thought we could do anything for 6 weeks...

> Anyway, 6 weeks became 2 yrs, then they were returned to a drug

> addicted mom and had a yr of hell. Then we got them back...after they

> bounced from emerg. shelters to foster homes they came back to us.

> Everything we had worked on fixing was gone. They both had severe

> behavior problems and we had pretty much helped them to solve all of

> that. They came back with much much worse problems (reactive

> attachment disorder), and the oldest has some really bad behavioural

> problems. If you email me privately, I could discuss it more but

> shouldn't online.

> There are times when we are dealing with extreme (I really do mean

> extreme) lying, stealing, fits that we both wonder what we have done

> to the rest of the family. Yet, we love them as our own, if that

> makes any sense. And more than that we honestly felt that we might be

> there only chance...there was certainly no one waiting in line to

> adopt them with their issues. One of them does have a lifelong

> medical problem (not cf) that only exacerbates the behaviors, because

> she can manipulate it as a behaviour thing. Still, for them I believe

> we did the right thing....for us, I am not always so sure. We cannot

> leave them with anyone, and the oldest is constantly getting kicked

> out of school. made the mistake of leaving them with family this

> weekend and I feel terrible the way she treated my mom. she is

> stillscreaming a fit right now, in fact and has refused to eat dinner

> (which is a huge issue due to her JD)

> I will also be honest....having three kids with CF of my own, I know

> in my heart that it would actually be easier to have adopted two more

> kids with CF as young kids (young enough that you don't have RAD as an

> issue) and without the behavioural component. I thought CF had an

> impact on the family and the rest of the kids until we encountered

> RAD. (and my kids with CF are high maint. CF....esp. Mallory, the 5

> yo who also has lots of other probs, asthma, osa, etc and is on ivs

> every 3 months regimen, has a port, etc... usually gets ivs

> about every 5 months or so, so its not like I am comparing to kids who

> just need enzymes or anything)

> MY sister is in process of adopting a little girl (cousins baby) with

> CF, actually.

> So this was a long way of saying, no, I don't think you are

> crazy...afterall, we never even planned to adopt and then we did,

> feeling it was the right thing to do. And, the child already lives

> with you, likely already considers you mom and dad (as our two adopted

> kiddos did...) and so it makes sense. If I was going to plan to adopt

> (which we prob. wouldn't because we have 5 biological kids), I think I

> would prefer to adopt a child with CF or anything medically fragile

> (CP, etc....even HIV) to one with RAD at this point.

> Hope this makes sense....have to leave out alot of detail so if you

> want more info, feel free to email me independently.

> Take care,

> Jen

> Mommy of 7, 3 with CF, two adopted, one with JD

>

WOW!! Jen how do you do it? Do you work? I think I would be out of my mind

with that kind of a load. You must be a Saint. Deb A

[Guest guest]

Yah, my crying episodes as well as my anger fits! The kids just get

me sooo crazy some days I wish I could run away for a couple of hours

or the night but I can't. Oh well, I found it's really helped keep me

on an even keel. Christy

> Hey, I'm on Celexa too. It really has helped decrease my crying

episodes.

> Cheryl

> Re: new cf mom to your message board

>

>

> Cheryl,

> I understand some of what you are talking about. Wyatt my 7yo

wcf

> is nuts. He worries himself about EVERYTHING. The things he says

> sound like an adult talking. He's really acting up lately. THat's

why

> I started trying to find him a penpal with cf and how I found

this

> group. Hunter my 2yo wocf is a maniac!! He is so hyper and all

boy.

> He jumps, climbs, yells, wrestles, runs (away from me all of the

> time) He wears me out and wears on my last nerve. I am looking

> forward to returning to work when we move back to california.

> I think it's good you scheduled yourself a therapy appointment.

I

> have gone through a severe depression.I think I've had it for a

long

> time but always chalked it off. I don't have time to be

depressed. My

> husband was deployed and I had Wyatt to take care of. Then we

came to

> Hawaii (and NO it's NOT paradise believe it or not) and I think

since

> my hubby is home(3yrs shore duty-now over)I finally gave myself

> permission to feel it and give into it. So I was crying every day

and

> very angry. Finally last Christmas I had a big ol breakdown and

went

> to the doctor. They put me on Celexa and immediately i felt the

> irritation and anger dissipate. A month later I FINALLY got an

> appointment and have been going every 2-4 weeks depending on

> schedule to talk to a psychaiatrist. It's really helping just to

vent

> about everything. I hope you find yours helpful too.

> Anyways, just thought I'd share so you know you aren't alone or

the

> only one w/ those feelings. (can you tell I'm having a bad day?)

> Lots of love, Christy mom of wyatt 7wcf and Hunter 2.5 wocf

>

>

> with cf. My middle boy, , has just gone to visit his gramma

in

> Windsor for a few days. This gives his mom here a little break.

I

> am not sure I will know what to do. He is such a handful right

now.

> He's busy,busy,busy..... climbing, jumping all over his baby

brother.

> He is crying for attention, I am trying to give him as much as he

> needs but it doesn't seem like enough to him. He pushes all my

> buttons.

> >

> > I have called to book therapy for myself. I am so angry, I

don't

> want to be angry anymore. I just want to try and enjoy my life

and

> my kids,ya know. They don't have any appt. for me until NOv.12th.

> >

> > Guess this site will be my therapy until then.

> > Cheryl,momto3 boys, Zac 6 yrs. wocf, Jake 2yrs.wocf, Matty 9

mo. wcf

>

>

>

>

[Guest guest]

In a message dated 10/30/2002 2:11:26 PM Central Standard Time,

tczcowl@... writes:

> Ya know what, would it be totally crazy to try and arrange something where a

> bunch of us CF moms meet once a year in a different location? Does that

> sound nuts? I feel like I know you all , even if we haven't met face to

> face. I wouldn't feel like we are strangers. We all have a special bond,

> whether we like it or not. We have children, grandchildren, siblings,etc.

> with CF. Think about it, we could pick the same weekend each year, bring

> tonnes of pictures of our kids to show to each other, go shopping, go

> dancing, go drinking, go spa-ing (just made that word up!) or just sit

> around and chat.

>

> What do you think?

> Cheryl, mom to 3 boys, Zac 6 yrs. wocf, Jake 2yrs. wocf, Matty 9 mo. wcf

>

SOUNDS WONDERFUL!!! But I don't know if my husband could handle me being

gone. Deb A

[Guest guest]

In a message dated 10/30/2002 2:11:26 PM Central Standard Time,

tczcowl@... writes:

> Ya know what, would it be totally crazy to try and arrange something where a

> bunch of us CF moms meet once a year in a different location? Does that

> sound nuts? I feel like I know you all , even if we haven't met face to

> face. I wouldn't feel like we are strangers. We all have a special bond,

> whether we like it or not. We have children, grandchildren, siblings,etc.

> with CF. Think about it, we could pick the same weekend each year, bring

> tonnes of pictures of our kids to show to each other, go shopping, go

> dancing, go drinking, go spa-ing (just made that word up!) or just sit

> around and chat.

>

> What do you think?

> Cheryl, mom to 3 boys, Zac 6 yrs. wocf, Jake 2yrs. wocf, Matty 9 mo. wcf

>

SOUNDS WONDERFUL!!! But I don't know if my husband could handle me being

gone. Deb A

[Guest guest]

In a message dated 10/30/2002 2:11:26 PM Central Standard Time,

tczcowl@... writes:

> Ya know what, would it be totally crazy to try and arrange something where a

> bunch of us CF moms meet once a year in a different location? Does that

> sound nuts? I feel like I know you all , even if we haven't met face to

> face. I wouldn't feel like we are strangers. We all have a special bond,

> whether we like it or not. We have children, grandchildren, siblings,etc.

> with CF. Think about it, we could pick the same weekend each year, bring

> tonnes of pictures of our kids to show to each other, go shopping, go

> dancing, go drinking, go spa-ing (just made that word up!) or just sit

> around and chat.

>

> What do you think?

> Cheryl, mom to 3 boys, Zac 6 yrs. wocf, Jake 2yrs. wocf, Matty 9 mo. wcf

>

SOUNDS WONDERFUL!!! But I don't know if my husband could handle me being

gone. Deb A

[Guest guest]

If we could manage it, I'm all up for that! I'd love to be able to

hang out for a weekend w/ a bunch of moms who know JUST HOW I FEEl

and what I go through! Doesn't sound nuts at all Cheryl. It sounds

like a dream

Christy

> Ya know what, would it be totally crazy to try and arrange

something where a bunch of us CF moms meet once a year in a different

location? Does that sound nuts? I feel like I know you all , even if

we haven't met face to face. I wouldn't feel like we are strangers.

We all have a special bond, whether we like it or not. We have

children, grandchildren, siblings,etc. with CF. Think about it, we

could pick the same weekend each year, bring tonnes of pictures of

our kids to show to each other, go shopping, go dancing, go drinking,

go spa-ing (just made that word up!) or just sit around and chat.

>

> What do you think?

> Cheryl, mom to 3 boys, Zac 6 yrs. wocf, Jake 2yrs. wocf, Matty 9

mo. wcf

[Guest guest]

If we could manage it, I'm all up for that! I'd love to be able to

hang out for a weekend w/ a bunch of moms who know JUST HOW I FEEl

and what I go through! Doesn't sound nuts at all Cheryl. It sounds

like a dream

Christy

> Ya know what, would it be totally crazy to try and arrange

something where a bunch of us CF moms meet once a year in a different

location? Does that sound nuts? I feel like I know you all , even if

we haven't met face to face. I wouldn't feel like we are strangers.

We all have a special bond, whether we like it or not. We have

children, grandchildren, siblings,etc. with CF. Think about it, we

could pick the same weekend each year, bring tonnes of pictures of

our kids to show to each other, go shopping, go dancing, go drinking,

go spa-ing (just made that word up!) or just sit around and chat.

>

> What do you think?

> Cheryl, mom to 3 boys, Zac 6 yrs. wocf, Jake 2yrs. wocf, Matty 9

mo. wcf

[Guest guest]

I'm in California (or will be in December) but will travel if we get

together and plan something! I think hubby needs to be alone w/ boys.

Do them all some good hehehe

> Hi.........

> Sounds good to me! I'm near Chicago.....what about everyone else?

> Cheri B., Mom to , 8yo invitro baby wcf & Christian 3yo

adopted nocf

> both Angels from Heaven!

>

> Re: new cf mom to your message board

>

>

> > In a message dated 10/30/2002 2:11:26 PM Central Standard Time,

> > tczcowl@t... writes:

> >

> >

> > > Ya know what, would it be totally crazy to try and arrange

something

> where a

> > > bunch of us CF moms meet once a year in a different location?

Does that

> > > sound nuts? I feel like I know you all , even if we haven't met

face to

> > > face. I wouldn't feel like we are strangers. We all have a

special

> bond,

> > > whether we like it or not. We have children, grandchildren,

> siblings,etc.

> > > with CF. Think about it, we could pick the same weekend each

year,

> bring

> > > tonnes of pictures of our kids to show to each other, go

shopping, go

> > > dancing, go drinking, go spa-ing (just made that word up!) or

just sit

> > > around and chat.

> > >

> > > What do you think?

> > > Cheryl, mom to 3 boys, Zac 6 yrs. wocf, Jake 2yrs. wocf, Matty

9 mo. wcf

> > >

> >

> > SOUNDS WONDERFUL!!! But I don't know if my husband could handle

me being

> > gone. Deb A

> >

> >

> >