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Hi Gail,

Thanks for the prayers and keep them coming. I'm far from out of the

woods with this. Mom is driving me batty with her insistance that I

eat when I'm nauseated and then being critical when I do eat..she had

a fit because I used tabasco sauce in my tuna salad...now I'm having

a pain attack 6 hours later and she's blaming it on that. She can be

irrational at times and I'm trying my best to get her to chill out

but not much success there...stress on me...blood sugar and pain

soar. I'm going to have to tough it out until I get disability

staying with her...I've got other outlets to go if need be for a

night or two. I'm planning on going to Texas to stay with my

biological mom for a week or so when I am feeling a little bit

better. Don't need her watching over me 24/7 either.

I'm off to try and eat something.

Peace,

> >>> Hello Everyone and Thank You for your Prayers!!! I had a rough

> time of it with the surgery. Did fantastic the first 5

days...screwed

> up what is left of my digestive system.>>>

>

> Dear ,

> Thanks so much for the update. I have been praying for you every

> day. Sorry you are having problems with pain and problems with

your

> digestive system. Hopefully you will be able to get relief with

the

> nerve surgery. Also hope it is going alright for you being home.

If

> I remember right you were going to be staying with your mom for

> awhile...sometimes that is great and sometimes a little rough (my

dad

> would drive me up a wall with 24/7). Please let us know how you

are

> doing and I will keep you in my prayers,

>

> Gail West þ Many People, Many Faces, One Voice

> Indiana State Chapter Representative

> Pancreatitis Association International

> http://www.pancassociation.org

> gwest1955@a...

>

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> Hello Everyone and Thank You for your Prayers!!!

> I had a rough time of it with the surgery. Did fantastic the first 5

> days actually I amazed the Dr's.

>

Dear ,

The few weeks you were gone passed quickly and it's hard to

believe that you are already home. I'm sorry that your healing

hasn't progressed as smoothly as you hoped and that you are

still having problems eating and with the pain.

Hopefully with time and productive healing you will be able to put

these problems behind you. I know it must seem as though the

days pass all to slowly without positive improvement, yet I feel

certain that the improvements will appear. Speaking from the

experience of having gone through four major surgeries in my

past, I know it sometimes takes several weeks to recover from

any surgery, and with something as radical as you had done, it

make take months or more before you see significant

improvement. Meanwhile, I hope you can be happy with each

small step forward. You were in really bad shape physically

before this all began, so your body has a lot of healing to go

through.

We'll keep praying for your full recovery and hope you see the

progress you're wishing for soon.

With hope and prayers,

Heidi

Heidi H. Griffeth

South Carolina

Southeastern Representative

Pancreatitis Association, Intl.

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> Hello Everyone and Thank You for your Prayers!!!

> I had a rough time of it with the surgery. Did fantastic the first 5

> days actually I amazed the Dr's.

>

Dear ,

The few weeks you were gone passed quickly and it's hard to

believe that you are already home. I'm sorry that your healing

hasn't progressed as smoothly as you hoped and that you are

still having problems eating and with the pain.

Hopefully with time and productive healing you will be able to put

these problems behind you. I know it must seem as though the

days pass all to slowly without positive improvement, yet I feel

certain that the improvements will appear. Speaking from the

experience of having gone through four major surgeries in my

past, I know it sometimes takes several weeks to recover from

any surgery, and with something as radical as you had done, it

make take months or more before you see significant

improvement. Meanwhile, I hope you can be happy with each

small step forward. You were in really bad shape physically

before this all began, so your body has a lot of healing to go

through.

We'll keep praying for your full recovery and hope you see the

progress you're wishing for soon.

With hope and prayers,

Heidi

Heidi H. Griffeth

South Carolina

Southeastern Representative

Pancreatitis Association, Intl.

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> Hello Everyone and Thank You for your Prayers!!!

> I had a rough time of it with the surgery. Did fantastic the first 5

> days actually I amazed the Dr's.

>

Dear ,

The few weeks you were gone passed quickly and it's hard to

believe that you are already home. I'm sorry that your healing

hasn't progressed as smoothly as you hoped and that you are

still having problems eating and with the pain.

Hopefully with time and productive healing you will be able to put

these problems behind you. I know it must seem as though the

days pass all to slowly without positive improvement, yet I feel

certain that the improvements will appear. Speaking from the

experience of having gone through four major surgeries in my

past, I know it sometimes takes several weeks to recover from

any surgery, and with something as radical as you had done, it

make take months or more before you see significant

improvement. Meanwhile, I hope you can be happy with each

small step forward. You were in really bad shape physically

before this all began, so your body has a lot of healing to go

through.

We'll keep praying for your full recovery and hope you see the

progress you're wishing for soon.

With hope and prayers,

Heidi

Heidi H. Griffeth

South Carolina

Southeastern Representative

Pancreatitis Association, Intl.

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  • 2 weeks later...

Yes, 's snot is just about like that -- rubber cement. We irrigate

with nasal spray then suck it out with a nasal aspirator frequently, esp

when sick. The doc just prescribed Flonase, too, but (bad mom) I haven't

yet filled the 'script for it. I think though, that it will help.

Thinking of you and Madeline, Jana. I don't always have time to post

replies but I am sure thinking of you guys. Thanks for all the celiac

disease info. Right now we're gluten free and I'm so confused as to what

to do about testing, if anything.

)O(

mama to , 2yo, w/CF, and , 4yo, no CF

Update

Just a real quick update. Some of you have emailed me off the list,

thank you so much for that, but for the others on the list...

Madeline had her 2nd sweat test today. We'll receive the results at

the earliest Monday. Has anyone had significantly different results

on a 2nd test? Is it possible that the 1st was an error? Wishful

thinking, I guess...but I can't stop wishing, right?

Right now she's got a terrible sinus " thing " - I don't know what else

to call it. Nose is running and/or stuffy, she's really congested.

Poor little thing. Our pediatrican didn't suggest antibiotics last

week, but I'll take her back next week if it's not cleared up.

This is kind of gross, but has anyone else ever noticed their child's

snot in their nose is REALLY sticky and thick? Madeline's is like

rubber cement, it's disgusting. It's also so difficult to get out!

(Sorry, I know that was disgusting, but I needed to ask!)

I guess that's about it. I just wanted everyone to know I'm still

around. Thank you all so much for your ongoing support and kindness,

it means so much to me and Madie! Please let me know about the nose

snotty stuff, I'm kind of concerned.

Love and hugs to everyone,

Jana

Madeline - 23 months (almost 2!) GA2 and being tested for CF.

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.

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

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Share on other sites

Yes, 's snot is just about like that -- rubber cement. We irrigate

with nasal spray then suck it out with a nasal aspirator frequently, esp

when sick. The doc just prescribed Flonase, too, but (bad mom) I haven't

yet filled the 'script for it. I think though, that it will help.

Thinking of you and Madeline, Jana. I don't always have time to post

replies but I am sure thinking of you guys. Thanks for all the celiac

disease info. Right now we're gluten free and I'm so confused as to what

to do about testing, if anything.

)O(

mama to , 2yo, w/CF, and , 4yo, no CF

Update

Just a real quick update. Some of you have emailed me off the list,

thank you so much for that, but for the others on the list...

Madeline had her 2nd sweat test today. We'll receive the results at

the earliest Monday. Has anyone had significantly different results

on a 2nd test? Is it possible that the 1st was an error? Wishful

thinking, I guess...but I can't stop wishing, right?

Right now she's got a terrible sinus " thing " - I don't know what else

to call it. Nose is running and/or stuffy, she's really congested.

Poor little thing. Our pediatrican didn't suggest antibiotics last

week, but I'll take her back next week if it's not cleared up.

This is kind of gross, but has anyone else ever noticed their child's

snot in their nose is REALLY sticky and thick? Madeline's is like

rubber cement, it's disgusting. It's also so difficult to get out!

(Sorry, I know that was disgusting, but I needed to ask!)

I guess that's about it. I just wanted everyone to know I'm still

around. Thank you all so much for your ongoing support and kindness,

it means so much to me and Madie! Please let me know about the nose

snotty stuff, I'm kind of concerned.

Love and hugs to everyone,

Jana

Madeline - 23 months (almost 2!) GA2 and being tested for CF.

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.

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

Link to comment
Share on other sites

Yes, 's snot is just about like that -- rubber cement. We irrigate

with nasal spray then suck it out with a nasal aspirator frequently, esp

when sick. The doc just prescribed Flonase, too, but (bad mom) I haven't

yet filled the 'script for it. I think though, that it will help.

Thinking of you and Madeline, Jana. I don't always have time to post

replies but I am sure thinking of you guys. Thanks for all the celiac

disease info. Right now we're gluten free and I'm so confused as to what

to do about testing, if anything.

)O(

mama to , 2yo, w/CF, and , 4yo, no CF

Update

Just a real quick update. Some of you have emailed me off the list,

thank you so much for that, but for the others on the list...

Madeline had her 2nd sweat test today. We'll receive the results at

the earliest Monday. Has anyone had significantly different results

on a 2nd test? Is it possible that the 1st was an error? Wishful

thinking, I guess...but I can't stop wishing, right?

Right now she's got a terrible sinus " thing " - I don't know what else

to call it. Nose is running and/or stuffy, she's really congested.

Poor little thing. Our pediatrican didn't suggest antibiotics last

week, but I'll take her back next week if it's not cleared up.

This is kind of gross, but has anyone else ever noticed their child's

snot in their nose is REALLY sticky and thick? Madeline's is like

rubber cement, it's disgusting. It's also so difficult to get out!

(Sorry, I know that was disgusting, but I needed to ask!)

I guess that's about it. I just wanted everyone to know I'm still

around. Thank you all so much for your ongoing support and kindness,

it means so much to me and Madie! Please let me know about the nose

snotty stuff, I'm kind of concerned.

Love and hugs to everyone,

Jana

Madeline - 23 months (almost 2!) GA2 and being tested for CF.

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.

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

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Hi Jana,

Regarding thick snot... boy does that brings back bad memories! When

my son was young this was always a problem for him. We'd do sinus

irrigations, nasal steroids, nothing seemed to help, not even

guaifenesin could thin that rubber cement snot. He'd always end up

with sinus infections. It seemed like twice a year he'd live on

Bactrim for several weeks as a prevention against infection (sadly,

and ironically, we are both now allergic to this nice, cheap med!).

Like , I also aspirated his nose. I'd take the bulb-syringe and

try sucking it out while coaching him to blow, blow, blow. We had to

do it in tandem, if he stopped blowing then the snot would get sucked

right back up the nose even if I was still using the aspirator.

It was funny, later at his first PFT test the technician coached him

to blow, blow, blow and he looked confused. He pulled the hose away

from his mouth and said, " I can't with this on my nose. " (meaning, the

clip... he thought she wanted him to blow his nose!)

Things improved dramatically after his doctor finally noticed a polyp

in his nose. I don't know why he never sent him to an ENT for just the

rubber cement problem, which was frustrating enough. Maybe the doctor

thought my son's history of allergies, asthma, and CF just went

hand-in-hand with the rubber-snot problem. But after the ENT removed

the polyps his health took a huge leap forward! No more rubber cement

snot -- I mean totally gone for good, and still gone to this day!

He was diagnosed with CF at age 4.4 years, and had the polyp surgery

around 8 years. The polyps grew back several years later but we

quickly had them removed, but even then he still never got the rubber

cement snot like before.

Kim

Mom to (23 wcf and asthma) and (20 asthma, ncf)

> Just a real quick update. Some of you have emailed me off the list,

> thank you so much for that, but for the others on the list...

>

> Madeline had her 2nd sweat test today. We'll receive the results at

> the earliest Monday. Has anyone had significantly different results

> on a 2nd test? Is it possible that the 1st was an error? Wishful

> thinking, I guess...but I can't stop wishing, right?

>

> Right now she's got a terrible sinus " thing " - I don't know what

else

> to call it. Nose is running and/or stuffy, she's really congested.

> Poor little thing. Our pediatrican didn't suggest antibiotics last

> week, but I'll take her back next week if it's not cleared up.

>

> This is kind of gross, but has anyone else ever noticed their

child's

> snot in their nose is REALLY sticky and thick? Madeline's is like

> rubber cement, it's disgusting. It's also so difficult to get out!

> (Sorry, I know that was disgusting, but I needed to ask!)

>

> I guess that's about it. I just wanted everyone to know I'm still

> around. Thank you all so much for your ongoing support and kindness,

> it means so much to me and Madie! Please let me know about the nose

> snotty stuff, I'm kind of concerned.

>

> Love and hugs to everyone,

> Jana

> Madeline - 23 months (almost 2!) GA2 and being tested for CF.

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Hi there Jana,

Thanks for the update. It sounds like your doing all the " right "

stuff..Your Madeline is doing yuck with the sinus problem, but that will be

worked on next week with some antibiotics as the doc sees it NEEDS that.

Cant let that stuff build up , if at all possible. It will anyway to some

amount. Prevention or maintance is so important. Your doing super there

mom-gal. Keep us all posted , we do care, each of us.

LOVE & HUGS,

grandmomBEV

Update

Just a real quick update. Some of you have emailed me off the list,

thank you so much for that, but for the others on the list...

Madeline had her 2nd sweat test today. We'll receive the results at

the earliest Monday. Has anyone had significantly different results

on a 2nd test? Is it possible that the 1st was an error? Wishful

thinking, I guess...but I can't stop wishing, right?

Right now she's got a terrible sinus " thing " - I don't know what else

to call it. Nose is running and/or stuffy, she's really congested.

Poor little thing. Our pediatrican didn't suggest antibiotics last

week, but I'll take her back next week if it's not cleared up.

This is kind of gross, but has anyone else ever noticed their child's

snot in their nose is REALLY sticky and thick? Madeline's is like

rubber cement, it's disgusting. It's also so difficult to get out!

(Sorry, I know that was disgusting, but I needed to ask!)

I guess that's about it. I just wanted everyone to know I'm still

around. Thank you all so much for your ongoing support and kindness,

it means so much to me and Madie! Please let me know about the nose

snotty stuff, I'm kind of concerned.

Love and hugs to everyone,

Jana

Madeline - 23 months (almost 2!) GA2 and being tested for CF.

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.

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

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Share on other sites

Hi there Jana,

Thanks for the update. It sounds like your doing all the " right "

stuff..Your Madeline is doing yuck with the sinus problem, but that will be

worked on next week with some antibiotics as the doc sees it NEEDS that.

Cant let that stuff build up , if at all possible. It will anyway to some

amount. Prevention or maintance is so important. Your doing super there

mom-gal. Keep us all posted , we do care, each of us.

LOVE & HUGS,

grandmomBEV

Update

Just a real quick update. Some of you have emailed me off the list,

thank you so much for that, but for the others on the list...

Madeline had her 2nd sweat test today. We'll receive the results at

the earliest Monday. Has anyone had significantly different results

on a 2nd test? Is it possible that the 1st was an error? Wishful

thinking, I guess...but I can't stop wishing, right?

Right now she's got a terrible sinus " thing " - I don't know what else

to call it. Nose is running and/or stuffy, she's really congested.

Poor little thing. Our pediatrican didn't suggest antibiotics last

week, but I'll take her back next week if it's not cleared up.

This is kind of gross, but has anyone else ever noticed their child's

snot in their nose is REALLY sticky and thick? Madeline's is like

rubber cement, it's disgusting. It's also so difficult to get out!

(Sorry, I know that was disgusting, but I needed to ask!)

I guess that's about it. I just wanted everyone to know I'm still

around. Thank you all so much for your ongoing support and kindness,

it means so much to me and Madie! Please let me know about the nose

snotty stuff, I'm kind of concerned.

Love and hugs to everyone,

Jana

Madeline - 23 months (almost 2!) GA2 and being tested for CF.

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.

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

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Share on other sites

Hi there Jana,

Thanks for the update. It sounds like your doing all the " right "

stuff..Your Madeline is doing yuck with the sinus problem, but that will be

worked on next week with some antibiotics as the doc sees it NEEDS that.

Cant let that stuff build up , if at all possible. It will anyway to some

amount. Prevention or maintance is so important. Your doing super there

mom-gal. Keep us all posted , we do care, each of us.

LOVE & HUGS,

grandmomBEV

Update

Just a real quick update. Some of you have emailed me off the list,

thank you so much for that, but for the others on the list...

Madeline had her 2nd sweat test today. We'll receive the results at

the earliest Monday. Has anyone had significantly different results

on a 2nd test? Is it possible that the 1st was an error? Wishful

thinking, I guess...but I can't stop wishing, right?

Right now she's got a terrible sinus " thing " - I don't know what else

to call it. Nose is running and/or stuffy, she's really congested.

Poor little thing. Our pediatrican didn't suggest antibiotics last

week, but I'll take her back next week if it's not cleared up.

This is kind of gross, but has anyone else ever noticed their child's

snot in their nose is REALLY sticky and thick? Madeline's is like

rubber cement, it's disgusting. It's also so difficult to get out!

(Sorry, I know that was disgusting, but I needed to ask!)

I guess that's about it. I just wanted everyone to know I'm still

around. Thank you all so much for your ongoing support and kindness,

it means so much to me and Madie! Please let me know about the nose

snotty stuff, I'm kind of concerned.

Love and hugs to everyone,

Jana

Madeline - 23 months (almost 2!) GA2 and being tested for CF.

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.

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

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Jana!

Hey, I can't believe you haven't read my post about Caden's " snot " . Maybe it

was before you joined the cf list. I may have even posted on the fod list. I

can't believe it hasn't been the topic of one of our private emails....

Oh, well, I am glad you asked because it is a question that I had.

We have to clean Caden's nose out! It is like rubber! You can pull it and it

will snap! No joke! Ever since he was a baby, we have had to clean his nose so

that he could breathe. I don't mean little crusty buggers either! I mean thick,

rubbery, gluey ones! No wonder the mucus in his sinus cavities are not moving

if it is anything like is what is at his nostrils!

What do the dr's say about Madie's? I don't have an explanation as of yet

anyway.

Well, it's early. Got to get Warren up for school. I am slow this morning. I am

so sick!

Later,

Krystena s

Caden 4 yrs GAII testing for CF

Update

Just a real quick update. Some of you have emailed me off the list,

thank you so much for that, but for the others on the list...

Madeline had her 2nd sweat test today. We'll receive the results at

the earliest Monday. Has anyone had significantly different results

on a 2nd test? Is it possible that the 1st was an error? Wishful

thinking, I guess...but I can't stop wishing, right?

Right now she's got a terrible sinus " thing " - I don't know what else

to call it. Nose is running and/or stuffy, she's really congested.

Poor little thing. Our pediatrican didn't suggest antibiotics last

week, but I'll take her back next week if it's not cleared up.

This is kind of gross, but has anyone else ever noticed their child's

snot in their nose is REALLY sticky and thick? Madeline's is like

rubber cement, it's disgusting. It's also so difficult to get out!

(Sorry, I know that was disgusting, but I needed to ask!)

I guess that's about it. I just wanted everyone to know I'm still

around. Thank you all so much for your ongoing support and kindness,

it means so much to me and Madie! Please let me know about the nose

snotty stuff, I'm kind of concerned.

Love and hugs to everyone,

Jana

Madeline - 23 months (almost 2!) GA2 and being tested for CF.

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.

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

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Yup...really sticky it is...and once you start sucking it out, it just keeps

coming forever...

Shanna

mom of Triana, age 2 wcf

Update

Just a real quick update. Some of you have emailed me off the list,

thank you so much for that, but for the others on the list...

Madeline had her 2nd sweat test today. We'll receive the results at

the earliest Monday. Has anyone had significantly different results

on a 2nd test? Is it possible that the 1st was an error? Wishful

thinking, I guess...but I can't stop wishing, right?

Right now she's got a terrible sinus " thing " - I don't know what else

to call it. Nose is running and/or stuffy, she's really congested.

Poor little thing. Our pediatrican didn't suggest antibiotics last

week, but I'll take her back next week if it's not cleared up.

This is kind of gross, but has anyone else ever noticed their child's

snot in their nose is REALLY sticky and thick? Madeline's is like

rubber cement, it's disgusting. It's also so difficult to get out!

(Sorry, I know that was disgusting, but I needed to ask!)

I guess that's about it. I just wanted everyone to know I'm still

around. Thank you all so much for your ongoing support and kindness,

it means so much to me and Madie! Please let me know about the nose

snotty stuff, I'm kind of concerned.

Love and hugs to everyone,

Jana

Madeline - 23 months (almost 2!) GA2 and being tested for CF.

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.

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

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Share on other sites

Yup...really sticky it is...and once you start sucking it out, it just keeps

coming forever...

Shanna

mom of Triana, age 2 wcf

Update

Just a real quick update. Some of you have emailed me off the list,

thank you so much for that, but for the others on the list...

Madeline had her 2nd sweat test today. We'll receive the results at

the earliest Monday. Has anyone had significantly different results

on a 2nd test? Is it possible that the 1st was an error? Wishful

thinking, I guess...but I can't stop wishing, right?

Right now she's got a terrible sinus " thing " - I don't know what else

to call it. Nose is running and/or stuffy, she's really congested.

Poor little thing. Our pediatrican didn't suggest antibiotics last

week, but I'll take her back next week if it's not cleared up.

This is kind of gross, but has anyone else ever noticed their child's

snot in their nose is REALLY sticky and thick? Madeline's is like

rubber cement, it's disgusting. It's also so difficult to get out!

(Sorry, I know that was disgusting, but I needed to ask!)

I guess that's about it. I just wanted everyone to know I'm still

around. Thank you all so much for your ongoing support and kindness,

it means so much to me and Madie! Please let me know about the nose

snotty stuff, I'm kind of concerned.

Love and hugs to everyone,

Jana

Madeline - 23 months (almost 2!) GA2 and being tested for CF.

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.

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

Link to comment
Share on other sites

Yup...really sticky it is...and once you start sucking it out, it just keeps

coming forever...

Shanna

mom of Triana, age 2 wcf

Update

Just a real quick update. Some of you have emailed me off the list,

thank you so much for that, but for the others on the list...

Madeline had her 2nd sweat test today. We'll receive the results at

the earliest Monday. Has anyone had significantly different results

on a 2nd test? Is it possible that the 1st was an error? Wishful

thinking, I guess...but I can't stop wishing, right?

Right now she's got a terrible sinus " thing " - I don't know what else

to call it. Nose is running and/or stuffy, she's really congested.

Poor little thing. Our pediatrican didn't suggest antibiotics last

week, but I'll take her back next week if it's not cleared up.

This is kind of gross, but has anyone else ever noticed their child's

snot in their nose is REALLY sticky and thick? Madeline's is like

rubber cement, it's disgusting. It's also so difficult to get out!

(Sorry, I know that was disgusting, but I needed to ask!)

I guess that's about it. I just wanted everyone to know I'm still

around. Thank you all so much for your ongoing support and kindness,

it means so much to me and Madie! Please let me know about the nose

snotty stuff, I'm kind of concerned.

Love and hugs to everyone,

Jana

Madeline - 23 months (almost 2!) GA2 and being tested for CF.

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.

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

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Share on other sites

Jana,

We talk about waaay grosser stuff than rubber cement snot (great description).

Yes, we have that.

There are sprays that will help. Plain saline (called OCEAN, I think)

will loosen it.

Also, keep her as hydrated as possible.

Hang in there, Jana.

Hope we are of help to you.

Lenora in Colorado

>Just a real quick update. Some of you have emailed me off the list,

>thank you so much for that, but for the others on the list...

>

>Madeline had her 2nd sweat test today. We'll receive the results at

>the earliest Monday. Has anyone had significantly different results

>on a 2nd test? Is it possible that the 1st was an error? Wishful

>thinking, I guess...but I can't stop wishing, right?

>

>Right now she's got a terrible sinus " thing " - I don't know what else

>to call it. Nose is running and/or stuffy, she's really congested.

>Poor little thing. Our pediatrican didn't suggest antibiotics last

>week, but I'll take her back next week if it's not cleared up.

>

>This is kind of gross, but has anyone else ever noticed their child's

>snot in their nose is REALLY sticky and thick? Madeline's is like

>rubber cement, it's disgusting. It's also so difficult to get out!

>(Sorry, I know that was disgusting, but I needed to ask!)

>

>I guess that's about it. I just wanted everyone to know I'm still

>around. Thank you all so much for your ongoing support and kindness,

>it means so much to me and Madie! Please let me know about the nose

>snotty stuff, I'm kind of concerned.

>

>Love and hugs to everyone,

>Jana

>Madeline - 23 months (almost 2!) GA2 and being tested for CF.

>

>

>

>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.

>

>--------------------------------------------------

>

>

>

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Jana,

We talk about waaay grosser stuff than rubber cement snot (great description).

Yes, we have that.

There are sprays that will help. Plain saline (called OCEAN, I think)

will loosen it.

Also, keep her as hydrated as possible.

Hang in there, Jana.

Hope we are of help to you.

Lenora in Colorado

>Just a real quick update. Some of you have emailed me off the list,

>thank you so much for that, but for the others on the list...

>

>Madeline had her 2nd sweat test today. We'll receive the results at

>the earliest Monday. Has anyone had significantly different results

>on a 2nd test? Is it possible that the 1st was an error? Wishful

>thinking, I guess...but I can't stop wishing, right?

>

>Right now she's got a terrible sinus " thing " - I don't know what else

>to call it. Nose is running and/or stuffy, she's really congested.

>Poor little thing. Our pediatrican didn't suggest antibiotics last

>week, but I'll take her back next week if it's not cleared up.

>

>This is kind of gross, but has anyone else ever noticed their child's

>snot in their nose is REALLY sticky and thick? Madeline's is like

>rubber cement, it's disgusting. It's also so difficult to get out!

>(Sorry, I know that was disgusting, but I needed to ask!)

>

>I guess that's about it. I just wanted everyone to know I'm still

>around. Thank you all so much for your ongoing support and kindness,

>it means so much to me and Madie! Please let me know about the nose

>snotty stuff, I'm kind of concerned.

>

>Love and hugs to everyone,

>Jana

>Madeline - 23 months (almost 2!) GA2 and being tested for CF.

>

>

>

>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.

>

>--------------------------------------------------

>

>

>

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  • 2 weeks later...

HOWDEEEEEEE, I am glad they are going to wait until tomorrow & do it right.

it is so exciting to see their wee faces light up and are happy. I sent a

little package today & a card but separately , so she would get something 2

times..

I know you/she will hear from many. These folks know just what its like to

get mail when in the club. You can tell her she is in a CLUB for special

people, big & small. You are doing a good " garndmom job " . best wishes &

loving thoughts to you too !!

LOVE & HUGS, grandmomBEV

update

has settled in nicely in the hospital. Thanks for the notes, they

help lift us all up. Tomorrow she will go down to x-ray and they will put

her to sleep for a little while, as the place her pic-line in. Last time

they tried to put it in blindly, poor thing they really should always use

x-ray as a guide and will be doing it always for from now on.

Please keep those cards and notes coming, you should see her face light up

when she opens up one. Thanks so much.

The hospital where she is Maine Medical Center has a wonderful program

where you can send greetings on line. You can go to

http://www.mmc.org/index.html click on patient and visitor services and

then click on send patient greetings. Just post your note and hit send and

taadaa...within a short period of time she is smiling ear to ear as she

opens and reads new mail.

is 5 years old, but is wise way beyond her years.( is this the

Grammy in me). It is so great to have you all, just a few words of

encouragement makes getting through the day so much easier.

><(((( " >

Steve & Louise Grandparents to Princess 5WCF and Her Footman,

Stevie 3 years old WOCF

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

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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HOWDEEEEEEE, I am glad they are going to wait until tomorrow & do it right.

it is so exciting to see their wee faces light up and are happy. I sent a

little package today & a card but separately , so she would get something 2

times..

I know you/she will hear from many. These folks know just what its like to

get mail when in the club. You can tell her she is in a CLUB for special

people, big & small. You are doing a good " garndmom job " . best wishes &

loving thoughts to you too !!

LOVE & HUGS, grandmomBEV

update

has settled in nicely in the hospital. Thanks for the notes, they

help lift us all up. Tomorrow she will go down to x-ray and they will put

her to sleep for a little while, as the place her pic-line in. Last time

they tried to put it in blindly, poor thing they really should always use

x-ray as a guide and will be doing it always for from now on.

Please keep those cards and notes coming, you should see her face light up

when she opens up one. Thanks so much.

The hospital where she is Maine Medical Center has a wonderful program

where you can send greetings on line. You can go to

http://www.mmc.org/index.html click on patient and visitor services and

then click on send patient greetings. Just post your note and hit send and

taadaa...within a short period of time she is smiling ear to ear as she

opens and reads new mail.

is 5 years old, but is wise way beyond her years.( is this the

Grammy in me). It is so great to have you all, just a few words of

encouragement makes getting through the day so much easier.

><(((( " >

Steve & Louise Grandparents to Princess 5WCF and Her Footman,

Stevie 3 years old WOCF

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

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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  • 1 month later...

YEAH!! good news is always welcome. Congrats!!

LOVE & HUGS, grandmomBEV

update

Well, another good clinic visit. now weighs 30.3# and is 37.3

inches. Twenty-fifth percentile for weight and fiftieth for height. Dr says

that after one more round of the Inhaled TOBI, he can come off and we will

see how he does, we will keep him on the Zithromax and see if it helps with

his sinuses. But overall he is doing really well and we go back in three

months.

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YEAH!! good news is always welcome. Congrats!!

LOVE & HUGS, grandmomBEV

update

Well, another good clinic visit. now weighs 30.3# and is 37.3

inches. Twenty-fifth percentile for weight and fiftieth for height. Dr says

that after one more round of the Inhaled TOBI, he can come off and we will

see how he does, we will keep him on the Zithromax and see if it helps with

his sinuses. But overall he is doing really well and we go back in three

months.

Link to comment
Share on other sites

YEAH!! good news is always welcome. Congrats!!

LOVE & HUGS, grandmomBEV

update

Well, another good clinic visit. now weighs 30.3# and is 37.3

inches. Twenty-fifth percentile for weight and fiftieth for height. Dr says

that after one more round of the Inhaled TOBI, he can come off and we will

see how he does, we will keep him on the Zithromax and see if it helps with

his sinuses. But overall he is doing really well and we go back in three

months.

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  • 1 month later...

In a message dated 2/17/2003 5:39:58 PM Eastern Standard Time,

KarynWms@... writes:

>

>

> Hi everyone,

>

> This is just a note to let you know that I am down and having a lot of

> trouble sitting up at the computer. I am doing my best, but can't seem to

> stay more than a little while. I am sorry if I can't respond to questions.

> I

> can't seem to remove myself from the fetal position in bed.

>

Dear Karyn, I hope you feel better tomorrow. I am so sorry that you are

having such pain. Please feel better soon. Love, Shirley

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In a message dated 2/17/2003 5:39:58 PM Eastern Standard Time,

KarynWms@... writes:

>

>

> Hi everyone,

>

> This is just a note to let you know that I am down and having a lot of

> trouble sitting up at the computer. I am doing my best, but can't seem to

> stay more than a little while. I am sorry if I can't respond to questions.

> I

> can't seem to remove myself from the fetal position in bed.

>

Dear Karyn, I hope you feel better tomorrow. I am so sorry that you are

having such pain. Please feel better soon. Love, Shirley

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Karyn,

hope that you are feeling better soon. You are in my

prayers.

Kimber

--

Kimber

Vallejo, CA

hominid2@...

Note: All advice given is personal opinion, not equal to

that of a licensed physician or health care professional.

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