Re: feeling depressed need some up lifting thoughts

[Guest guest]

In a message dated 7/7/2003 10:04:14 PM Central Daylight Time,

cfkids2@... writes:

> Hey gang, well we moved into an acutal house and out of base housing. I

> should be excited right? We had our 3 month cf appointments today.

> has lost 200 grams, Yoli hasn't gained at all but Phynix is 24 pounds and 10

>

> ounces. I'm so frusterated. Yoli has a dry cough and runny nose. They

> didn't do a thoat swab to make sure it wasn't PA. Just said to call back in

>

> a few days if it didn't get any better and they'd just give her antibiotics.

>

> She did sound clear though. I don't have anyone to talk to who half way

> understands what we're going through. It's just so frusterating. It's

> almost like they have accepted the fact that the kids are temerminal and are

>

> just going to die. We've been to 2 different doctors in this clinic and

> neither of them will answer my questions. The one we see now does but in a

> round about way. They always ask if the kids have been running fevers, but

> don't understand that in order for them to run fevers it has to be BAD!

> never ran a fever with her phnemonia till it was half on lung and 3/4

> the other. Or till she had the partial broncial collapse. I just feel so

> frusterated and don't know what to do. I asked about the glutathione

> therapy and they just gave me a hand out and that they don't recomend it

> untill more research has been done, which is understandable. It just feels

> like we've hit another brick wall. Will there ever be a light at the end of

>

> the tunnel? Will the kids ever start gaining weight like they need to? If

> anyone feels like chatting I'm on msn under gussuck107@... or

> cfkids2@... also I have AIM under my465roses . Any words of

> encouragment would be great. Thanks. Sorry for the depressing e-mail, I

> have no were else to turn and who better to cry to than people who know and

> understand what I'm going through.

>

> Jen A. mom to 4 (almost 5), Yoli 3, and PHynix 1 all w/cf. Orion 3

> months no cf.

Are you going to a CF clinic? If not I would look for the nearest clinic even

if it means to drive a distance to get there. It would be worth it. They

should be doing throat cultures to see if pseudomonas is present so they can

give

them antibiotics to get rid of it. Deb A

[Guest guest]

Wow. Phynix is doing great based on weight. Are and Yoli close

to the desired weight? You really have your hands full. Four health

children are a lot of work. Having three with CF must keep you

really busy. Do you have time to sleep? You must be really well

organised. I'm really impressed.

Gale

> Hey gang, well we moved into an acutal house and out of base

housing. I

> should be excited right? We had our 3 month cf appointments

today.

> has lost 200 grams, Yoli hasn't gained at all but Phynix is 24

pounds and 10

> ounces. I'm so frusterated. Yoli has a dry cough and runny nose.

They

> didn't do a thoat swab to make sure it wasn't PA. Just said to

call back in

> a few days if it didn't get any better and they'd just give her

antibiotics.

> She did sound clear though. I don't have anyone to talk to who

half way

> understands what we're going through. It's just so frusterating.

It's

> almost like they have accepted the fact that the kids are

temerminal and are

> just going to die. We've been to 2 different doctors in this

clinic and

> neither of them will answer my questions. The one we see now does

but in a

> round about way. They always ask if the kids have been running

fevers, but

> don't understand that in order for them to run fevers it has to be

BAD!

> never ran a fever with her phnemonia till it was half on lung

and 3/4

> the other. Or till she had the partial broncial collapse. I just

feel so

> frusterated and don't know what to do. I asked about the

glutathione

> therapy and they just gave me a hand out and that they don't

recomend it

> untill more research has been done, which is understandable. It

just feels

> like we've hit another brick wall. Will there ever be a light at

the end of

> the tunnel? Will the kids ever start gaining weight like they need

to? If

> anyone feels like chatting I'm on msn under gussuck107@h... or

> cfkids2@h... also I have AIM under my465roses . Any words of

> encouragment would be great. Thanks. Sorry for the depressing e-

mail, I

> have no were else to turn and who better to cry to than people who

know and

> understand what I'm going through.

>

> Jen A. mom to 4 (almost 5), Yoli 3, and PHynix 1 all w/cf.

Orion 3

> months no cf.

>

> _________________________________________________________________

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[Guest guest]

VERY TRUE .VERY GOOD ADVISE .......YOU ALWAYS KNOW THE RIGHT THING. I

GUESS EXPERIENCE IS THE BEST TEACHER

LOVE & HUGS<

GrandmomBEV

Re: feeling depressed need some up lifting thoughts

In a message dated 7/7/2003 10:04:14 PM Central Daylight Time,

cfkids2@... writes:

> Hey gang, well we moved into an acutal house and out of base housing. I

> should be excited right? We had our 3 month cf appointments today.

> has lost 200 grams, Yoli hasn't gained at all but Phynix is 24 pounds and

10

>

> ounces. I'm so frusterated. Yoli has a dry cough and runny nose. They

> didn't do a thoat swab to make sure it wasn't PA. Just said to call back

in

>

> a few days if it didn't get any better and they'd just give her

antibiotics.

>

> She did sound clear though. I don't have anyone to talk to who half way

> understands what we're going through. It's just so frusterating. It's

> almost like they have accepted the fact that the kids are temerminal and

are

>

> just going to die. We've been to 2 different doctors in this clinic and

> neither of them will answer my questions. The one we see now does but in

a

> round about way. They always ask if the kids have been running fevers,

but

> don't understand that in order for them to run fevers it has to be BAD!

> never ran a fever with her phnemonia till it was half on lung and 3/4

> the other. Or till she had the partial broncial collapse. I just feel so

> frusterated and don't know what to do. I asked about the glutathione

> therapy and they just gave me a hand out and that they don't recomend it

> untill more research has been done, which is understandable. It just

feels

> like we've hit another brick wall. Will there ever be a light at the end

of

>

> the tunnel? Will the kids ever start gaining weight like they need to?

If

> anyone feels like chatting I'm on msn under gussuck107@... or

> cfkids2@... also I have AIM under my465roses . Any words of

> encouragment would be great. Thanks. Sorry for the depressing e-mail, I

> have no were else to turn and who better to cry to than people who know

and

> understand what I'm going through.

>

> Jen A. mom to 4 (almost 5), Yoli 3, and PHynix 1 all w/cf. Orion 3

> months no cf.

Are you going to a CF clinic? If not I would look for the nearest clinic

even

if it means to drive a distance to get there. It would be worth it. They

should be doing throat cultures to see if pseudomonas is present so they can

give

them antibiotics to get rid of it. Deb A

[Guest guest]

Jen,

I don't want to make you more worried but has sounded " clear " when she

had pneumonia. Just keep a close eye on her.

Ask at your CF clinic if there is another mom (maybe with an older child) who is

willing to talk to another parent. This was something I found very

valuable-especially when was sick. The woman that I met through clinic,

has become a friend to me. We have helped each other through hospital stays and

whatnot, just by being there on the other end of the phone. This list is great

but sometimes you need to hear a voice as well as read the supportive words.

Seriously, this has helped me when I felt really down, and also, I was able to

help her when she was down too.

feeling depressed need some up lifting thoughts

Hey gang, well we moved into an acutal house and out of base housing. I

should be excited right? We had our 3 month cf appointments today.

has lost 200 grams, Yoli hasn't gained at all but Phynix is 24 pounds and 10

ounces. I'm so frusterated. Yoli has a dry cough and runny nose. They

didn't do a thoat swab to make sure it wasn't PA. Just said to call back in

a few days if it didn't get any better and they'd just give her antibiotics.

She did sound clear though. I don't have anyone to talk to who half way

understands what we're going through. It's just so frusterating. It's

almost like they have accepted the fact that the kids are temerminal and are

just going to die. We've been to 2 different doctors in this clinic and

neither of them will answer my questions. The one we see now does but in a

round about way. They always ask if the kids have been running fevers, but

don't understand that in order for them to run fevers it has to be BAD!

never ran a fever with her phnemonia till it was half on lung and 3/4

the other. Or till she had the partial broncial collapse. I just feel so

frusterated and don't know what to do. I asked about the glutathione

therapy and they just gave me a hand out and that they don't recomend it

untill more research has been done, which is understandable. It just feels

like we've hit another brick wall. Will there ever be a light at the end of

the tunnel? Will the kids ever start gaining weight like they need to? If

anyone feels like chatting I'm on msn under gussuck107@... or

cfkids2@... also I have AIM under my465roses . Any words of

encouragment would be great. Thanks. Sorry for the depressing e-mail, I

have no were else to turn and who better to cry to than people who know and

understand what I'm going through.

Jen A. mom to 4 (almost 5), Yoli 3, and PHynix 1 all w/cf. Orion 3

months no cf.

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