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Mycah had her clinic visit today and I had a few comments. I asked about giving

enzymes with fruit or fruit juice and again was told they recommend enzymes only

for foods containing fat and/or protein. According to the nurse that is all the

enzymes break down.

Also, the doctor put Mycah on Pulmicort. I realize this med has probably been

discussed on the list many times but because we weren't using it I didn't pay

attention. I'll go through the archives, but if anyone has any comments or

warnings for me I'd be glad to read them.

Overall Mycah's visit was positive. However, as we went over her chest x-rays

and her blowing reports (sorry, I don't know the scientific names yet) the

doctor commented on the differences between her reports and those of a child

without CF. He said that even in children that are healthy and have pretty

normal lung capacity you can already see " things " in their lungs. Kind of

sobering. It made me come home really determined to keep her as healthy as

possible this summer. I may even get the flu shot myself! (maybe)

Lori in Florida

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Lori,

Our C.F. Dr here in Iowa suggest that everyone that is in the house around the

child should get the flu shot.

mother 0f 2 Mandy (13 wcf) and Cyle (11 wocf)

Lori Willner wrote:Mycah had her clinic visit today and I had a few comments.

I asked about giving enzymes with fruit or fruit juice and again was told they

recommend enzymes only for foods containing fat and/or protein. According to

the nurse that is all the enzymes break down.

Also, the doctor put Mycah on Pulmicort. I realize this med has probably been

discussed on the list many times but because we weren't using it I didn't pay

attention. I'll go through the archives, but if anyone has any comments or

warnings for me I'd be glad to read them.

Overall Mycah's visit was positive. However, as we went over her chest x-rays

and her blowing reports (sorry, I don't know the scientific names yet) the

doctor commented on the differences between her reports and those of a child

without CF. He said that even in children that are healthy and have pretty

normal lung capacity you can already see " things " in their lungs. Kind of

sobering. It made me come home really determined to keep her as healthy as

possible this summer. I may even get the flu shot myself! (maybe)

Lori in Florida

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All in all it sounded like the clinic was a good one. your doing all the

right things at the right times it appears. Great!! It is wonderful to hear

these. She will even do better with the added med. have a great weekend

ahead .

LOVE & HUGS, grandmomBEV

Clinic Visit

Mycah had her clinic visit today and I had a few comments. I asked about

giving enzymes with fruit or fruit juice and again was told they recommend

enzymes only for foods containing fat and/or protein. According to the

nurse that is all the enzymes break down.

Also, the doctor put Mycah on Pulmicort. I realize this med has probably

been discussed on the list many times but because we weren't using it I

didn't pay attention. I'll go through the archives, but if anyone has any

comments or warnings for me I'd be glad to read them.

Overall Mycah's visit was positive. However, as we went over her chest

x-rays and her blowing reports (sorry, I don't know the scientific names

yet) the doctor commented on the differences between her reports and those

of a child without CF. He said that even in children that are healthy and

have pretty normal lung capacity you can already see " things " in their

lungs. Kind of sobering. It made me come home really determined to keep

her as healthy as possible this summer. I may even get the flu shot myself!

(maybe)

Lori in Florida

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All in all it sounded like the clinic was a good one. your doing all the

right things at the right times it appears. Great!! It is wonderful to hear

these. She will even do better with the added med. have a great weekend

ahead .

LOVE & HUGS, grandmomBEV

Clinic Visit

Mycah had her clinic visit today and I had a few comments. I asked about

giving enzymes with fruit or fruit juice and again was told they recommend

enzymes only for foods containing fat and/or protein. According to the

nurse that is all the enzymes break down.

Also, the doctor put Mycah on Pulmicort. I realize this med has probably

been discussed on the list many times but because we weren't using it I

didn't pay attention. I'll go through the archives, but if anyone has any

comments or warnings for me I'd be glad to read them.

Overall Mycah's visit was positive. However, as we went over her chest

x-rays and her blowing reports (sorry, I don't know the scientific names

yet) the doctor commented on the differences between her reports and those

of a child without CF. He said that even in children that are healthy and

have pretty normal lung capacity you can already see " things " in their

lungs. Kind of sobering. It made me come home really determined to keep

her as healthy as possible this summer. I may even get the flu shot myself!

(maybe)

Lori in Florida

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All in all it sounded like the clinic was a good one. your doing all the

right things at the right times it appears. Great!! It is wonderful to hear

these. She will even do better with the added med. have a great weekend

ahead .

LOVE & HUGS, grandmomBEV

Clinic Visit

Mycah had her clinic visit today and I had a few comments. I asked about

giving enzymes with fruit or fruit juice and again was told they recommend

enzymes only for foods containing fat and/or protein. According to the

nurse that is all the enzymes break down.

Also, the doctor put Mycah on Pulmicort. I realize this med has probably

been discussed on the list many times but because we weren't using it I

didn't pay attention. I'll go through the archives, but if anyone has any

comments or warnings for me I'd be glad to read them.

Overall Mycah's visit was positive. However, as we went over her chest

x-rays and her blowing reports (sorry, I don't know the scientific names

yet) the doctor commented on the differences between her reports and those

of a child without CF. He said that even in children that are healthy and

have pretty normal lung capacity you can already see " things " in their

lungs. Kind of sobering. It made me come home really determined to keep

her as healthy as possible this summer. I may even get the flu shot myself!

(maybe)

Lori in Florida

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Our whole family has always gotten the flu shot. Our pediatrician was the

one who recommended that.

Clinic Visit

> Mycah had her clinic visit today and I had a few comments. I asked about

giving enzymes with fruit or fruit juice and again was told they recommend

enzymes only for foods containing fat and/or protein. According to the

nurse that is all the enzymes break down.

>

> Also, the doctor put Mycah on Pulmicort. I realize this med has probably

been discussed on the list many times but because we weren't using it I

didn't pay attention. I'll go through the archives, but if anyone has any

comments or warnings for me I'd be glad to read them.

>

> Overall Mycah's visit was positive. However, as we went over her chest

x-rays and her blowing reports (sorry, I don't know the scientific names

yet) the doctor commented on the differences between her reports and those

of a child without CF. He said that even in children that are healthy and

have pretty normal lung capacity you can already see " things " in their

lungs. Kind of sobering. It made me come home really determined to keep

her as healthy as possible this summer. I may even get the flu shot myself!

(maybe)

>

> Lori in Florida

>

>

>

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In a message dated 8/21/2002 9:42:08 PM Central Daylight Time,

earth_angel_1968@... writes:

> Our C.F. Dr here in Iowa suggest that everyone that is in the house around

> the child should get the flu shot.

> mother 0f 2 Mandy (13 wcf) and Cyle (11 wocf)

,

What doctor do you see in Iowa? Deb A

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> Mycah had her clinic visit today and I had a few comments. I asked

about giving enzymes with fruit or fruit juice and again was told

they recommend enzymes only for foods containing fat and/or protein.

According to the nurse that is all the enzymes break down.

>

> Also, the doctor put Mycah on Pulmicort. I realize this med has

probably been discussed on the list many times but because we weren't

using it I didn't pay attention. I'll go through the archives, but

if anyone has any comments or warnings for me I'd be glad to read

them.

>

> Overall Mycah's visit was positive. However, as we went over her

chest x-rays and her blowing reports (sorry, I don't know the

scientific names yet) the doctor commented on the differences between

her reports and those of a child without CF. He said that even in

children that are healthy and have pretty normal lung capacity you

can already see " things " in their lungs. Kind of sobering. It made

me come home really determined to keep her as healthy as possible

this summer. I may even get the flu shot myself! (maybe)

>

> Lori in Florida

>

>

>

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Kim, Thanks for your information. Mycah has been on TOBI up until three months

ago. Because she wasn't culturing any PA or anything else bad for about the

last year, they took her off it. The pulmicort is to replace the intal/cromolyn

she use to mix with albuterol.

Thanks for your response.

Lori

Re: Clinic Visit

> Mycah had her clinic visit today and I had a few comments. I asked

about giving enzymes with fruit or fruit juice and again was told

they recommend enzymes only for foods containing fat and/or protein.

According to the nurse that is all the enzymes break down.

>

> Also, the doctor put Mycah on Pulmicort. I realize this med has

probably been discussed on the list many times but because we weren't

using it I didn't pay attention. I'll go through the archives, but

if anyone has any comments or warnings for me I'd be glad to read

them.

>

> Overall Mycah's visit was positive. However, as we went over her

chest x-rays and her blowing reports (sorry, I don't know the

scientific names yet) the doctor commented on the differences between

her reports and those of a child without CF. He said that even in

children that are healthy and have pretty normal lung capacity you

can already see " things " in their lungs. Kind of sobering. It made

me come home really determined to keep her as healthy as possible

this summer. I may even get the flu shot myself! (maybe)

>

> Lori in Florida

>

>

>

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Clinic Visit

> Mycah had her clinic visit today and I had a few comments. I asked about

giving enzymes with fruit or fruit juice and again was told they recommend

enzymes only for foods containing fat and/or protein. According to the

nurse that is all the enzymes break down.

***Here we go again :-)) Tell the nurse she's wrong. Of course the enzymes

are able to break down fruits and juices. Enzymes contain Amylase, so they

are able to break down all kinds of carbs. The whole discussion is about the

question, whether pwcf NEED enzymes to digest carbohydrates. Since the body

produces the Amylase in the saliva glands and in the pancreas there are some

who say that the amylase from the saliva is sufficient to digest the carbs

while others say that it isn't. It's the same with proteins. Proteases like

Pepsin are produced in the stomach and maybe you don't need to give enzymes

with proteins, maybe not. And from there it's only a short way to the

discussion, whether it is better to give too much enzymes or too less.

Personally I have given up to find an answer and just go by symptoms now.

Fiona's bloodwork is okay and she is thriving, so we seem to do something

right.

>

> Also, the doctor put Mycah on Pulmicort. I realize this med has probably

been discussed on the list many times but because we weren't using it I

didn't pay attention. I'll go through the archives, but if anyone has any

comments or warnings for me I'd be glad to read them.

>

> Overall Mycah's visit was positive. However, as we went over her chest

x-rays and her blowing reports (sorry, I don't know the scientific names

yet) the doctor commented on the differences between her reports and those

of a child without CF. He said that even in children that are healthy and

have pretty normal lung capacity you can already see " things " in their

lungs. Kind of sobering. It made me come home really determined to keep

her as healthy as possible this summer. I may even get the flu shot myself!

(maybe)

*** Same with Fiona. Although she is so healthy, there are a few typical CF

signs in her lung x-rays and in the pulmonary function test (PFT). Yep, it's

sobering.

Fiona had her quarterly check today too, we saw the new CF doc and the new

physiotherapist and Fiona liked them both. So the check went well, although

Fiona is still declining on the weight chart, 50% now coming from 75% one

year ago. I hope she's just too active to get some fat on her hips.

Although Fiona has still one year to go until she goes to school, she has

read her first book today. We didn't push, she just learned it by herself.

That's bittersweet I think. While it can't hurt to be clever, she becomes

more and more pondering and book-wormy, what is so typical for an only

child. And we don't want her to be a typical only child. And she is moving

forward too fast for her class and we don't want her to be lonely.

>

> Lori in Florida

Peace

Torsten, dad of Fiona 5wcf

e-mail: torstenkrafft@...

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Torsten,

That is great about Fiona reading her first book!

I was an only child for almost 6 years and also an early reader. Books were

my world of fantasy!

And don't worry about her getting ahead of her friends in school---when she

gets too far ahead of them, she can always tutor the ones she really likes so

they can catch up with her! Also, hopefully, she will not be a full head

taller than the rest of the kids her age----I thought the other kids were all

my " tribe " and I was Chief ManyHaHa (no, I am not making that up!) and would

bop them on the head if they didn't behave like good little Indians. Mom

said I learned something new--and something mean--every day I went to school

and stopped being her little baby doll.

Reading can be a lifelong friend and adventure. Perhaps Fiona will one day

become " Professor Fiona " . Or " General Fiona " ??

Either way, I am sure you (and us, too) will enjoy the wait.

Aunt B

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Torsten,

That is great about Fiona reading her first book!

I was an only child for almost 6 years and also an early reader. Books were

my world of fantasy!

And don't worry about her getting ahead of her friends in school---when she

gets too far ahead of them, she can always tutor the ones she really likes so

they can catch up with her! Also, hopefully, she will not be a full head

taller than the rest of the kids her age----I thought the other kids were all

my " tribe " and I was Chief ManyHaHa (no, I am not making that up!) and would

bop them on the head if they didn't behave like good little Indians. Mom

said I learned something new--and something mean--every day I went to school

and stopped being her little baby doll.

Reading can be a lifelong friend and adventure. Perhaps Fiona will one day

become " Professor Fiona " . Or " General Fiona " ??

Either way, I am sure you (and us, too) will enjoy the wait.

Aunt B

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Torsten,

That is great about Fiona reading her first book!

I was an only child for almost 6 years and also an early reader. Books were

my world of fantasy!

And don't worry about her getting ahead of her friends in school---when she

gets too far ahead of them, she can always tutor the ones she really likes so

they can catch up with her! Also, hopefully, she will not be a full head

taller than the rest of the kids her age----I thought the other kids were all

my " tribe " and I was Chief ManyHaHa (no, I am not making that up!) and would

bop them on the head if they didn't behave like good little Indians. Mom

said I learned something new--and something mean--every day I went to school

and stopped being her little baby doll.

Reading can be a lifelong friend and adventure. Perhaps Fiona will one day

become " Professor Fiona " . Or " General Fiona " ??

Either way, I am sure you (and us, too) will enjoy the wait.

Aunt B

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on 23/8/02 9:06 AM, Torsten Krafft at Torstenkrafft@... wrote:

>

> Although Fiona has still one year to go until she goes to school, she has

> read her first book today. We didn't push, she just learned it by herself.

> That's bittersweet I think. While it can't hurt to be clever, she becomes

> more and more pondering and book-wormy, what is so typical for an only

> child. And we don't want her to be a typical only child. And she is moving

> forward too fast for her class and we don't want her to be lonely.

Torsten,

Sian did the same thing - she was reading independently at the age of four.

While it meant that there were a few issues when she started school, we have

them under control now. Like you, we didn't teach Sian to read, we just

read to her, and she figured it out for herself. Fiona will be fine - just

means that you can concentrate on other things and let the reading sort

itself out.

Does she write yet? We discovered recently that while Sian was reading at

an 8 year old level, she was writing at a seven year old level, and we have

had to do some work with her to make sure that her writing can catch up.

Visit to the GP yesterday - vaccination against meningoccocal(sp?),

discussions about ADD, and the partial obstruction in Sian's bowel has

reformed. Back to the paediatrician in two weeks!

($#%@#%$#$%$@##@#$%@#%$%@) (Angry, annoyed, upset, extremely pissed off,

me? YES!!)

Much love to all

- Mum to Cate 9yrs wocf and Sian 5yrs wcf

Canberra Australia-

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on 23/8/02 9:06 AM, Torsten Krafft at Torstenkrafft@... wrote:

>

> Although Fiona has still one year to go until she goes to school, she has

> read her first book today. We didn't push, she just learned it by herself.

> That's bittersweet I think. While it can't hurt to be clever, she becomes

> more and more pondering and book-wormy, what is so typical for an only

> child. And we don't want her to be a typical only child. And she is moving

> forward too fast for her class and we don't want her to be lonely.

Torsten,

Sian did the same thing - she was reading independently at the age of four.

While it meant that there were a few issues when she started school, we have

them under control now. Like you, we didn't teach Sian to read, we just

read to her, and she figured it out for herself. Fiona will be fine - just

means that you can concentrate on other things and let the reading sort

itself out.

Does she write yet? We discovered recently that while Sian was reading at

an 8 year old level, she was writing at a seven year old level, and we have

had to do some work with her to make sure that her writing can catch up.

Visit to the GP yesterday - vaccination against meningoccocal(sp?),

discussions about ADD, and the partial obstruction in Sian's bowel has

reformed. Back to the paediatrician in two weeks!

($#%@#%$#$%$@##@#$%@#%$%@) (Angry, annoyed, upset, extremely pissed off,

me? YES!!)

Much love to all

- Mum to Cate 9yrs wocf and Sian 5yrs wcf

Canberra Australia-

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on 23/8/02 9:06 AM, Torsten Krafft at Torstenkrafft@... wrote:

>

> Although Fiona has still one year to go until she goes to school, she has

> read her first book today. We didn't push, she just learned it by herself.

> That's bittersweet I think. While it can't hurt to be clever, she becomes

> more and more pondering and book-wormy, what is so typical for an only

> child. And we don't want her to be a typical only child. And she is moving

> forward too fast for her class and we don't want her to be lonely.

Torsten,

Sian did the same thing - she was reading independently at the age of four.

While it meant that there were a few issues when she started school, we have

them under control now. Like you, we didn't teach Sian to read, we just

read to her, and she figured it out for herself. Fiona will be fine - just

means that you can concentrate on other things and let the reading sort

itself out.

Does she write yet? We discovered recently that while Sian was reading at

an 8 year old level, she was writing at a seven year old level, and we have

had to do some work with her to make sure that her writing can catch up.

Visit to the GP yesterday - vaccination against meningoccocal(sp?),

discussions about ADD, and the partial obstruction in Sian's bowel has

reformed. Back to the paediatrician in two weeks!

($#%@#%$#$%$@##@#$%@#%$%@) (Angry, annoyed, upset, extremely pissed off,

me? YES!!)

Much love to all

- Mum to Cate 9yrs wocf and Sian 5yrs wcf

Canberra Australia-

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Fiona will be fine - just

> means that you can concentrate on other things and let the reading

sort

> itself out.

Hi ,

thanks for your comments. Concentrating on other things, yep we do

that. Picture two frustrated parents at the breakfast table

encouraging her daughter to eat while that little rugrat grabs the

cereal box for the fifth time and tries to read the ingredients list,

LOL!

>

> Does she write yet?

Yes, but fortunately not (yet) at the breakfast table. Eating has

become quite an issue in our house and the recent message from

about the mom-in-law trying to " help " could have been from me

too.

Peace

Torsten, dad of Fiona 5wcf who can read, write, compute but not eat

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Fiona will be fine - just

> means that you can concentrate on other things and let the reading

sort

> itself out.

Hi ,

thanks for your comments. Concentrating on other things, yep we do

that. Picture two frustrated parents at the breakfast table

encouraging her daughter to eat while that little rugrat grabs the

cereal box for the fifth time and tries to read the ingredients list,

LOL!

>

> Does she write yet?

Yes, but fortunately not (yet) at the breakfast table. Eating has

become quite an issue in our house and the recent message from

about the mom-in-law trying to " help " could have been from me

too.

Peace

Torsten, dad of Fiona 5wcf who can read, write, compute but not eat

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Fiona will be fine - just

> means that you can concentrate on other things and let the reading

sort

> itself out.

Hi ,

thanks for your comments. Concentrating on other things, yep we do

that. Picture two frustrated parents at the breakfast table

encouraging her daughter to eat while that little rugrat grabs the

cereal box for the fifth time and tries to read the ingredients list,

LOL!

>

> Does she write yet?

Yes, but fortunately not (yet) at the breakfast table. Eating has

become quite an issue in our house and the recent message from

about the mom-in-law trying to " help " could have been from me

too.

Peace

Torsten, dad of Fiona 5wcf who can read, write, compute but not eat

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Hi Aunt B.

thanks for your reply. We hope that Fiona will have a sibling at 6

too. It would be great if Fiona would tutor her friends and (even

more important) would learn from them too. At the moment she is a

bonehead with zero patience and not interested in doing things she

doesn't like to do. Our achievements to get her interested in normal

food backfire in the behavior department :-((

But then the holidays are over now and she goes to kindy again, I

hope that solves the problems partially.

Peace

Torsten

> Torsten,

> That is great about Fiona reading her first book!

> I was an only child for almost 6 years and also an early reader.

Books were

> my world of fantasy!

> And don't worry about her getting ahead of her friends in school---

when she

> gets too far ahead of them, she can always tutor the ones she

really likes so

> they can catch up with her! Also, hopefully, she will not be a

full head

> taller than the rest of the kids her age----I thought the other

kids were all

> my " tribe " and I was Chief ManyHaHa (no, I am not making that up!)

and would

> bop them on the head if they didn't behave like good little

Indians. Mom

> said I learned something new--and something mean--every day I went

to school

> and stopped being her little baby doll.

> Reading can be a lifelong friend and adventure. Perhaps Fiona will

one day

> become " Professor Fiona " . Or " General Fiona " ??

> Either way, I am sure you (and us, too) will enjoy the wait.

> Aunt B

>

>

>

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Hi Aunt B.

thanks for your reply. We hope that Fiona will have a sibling at 6

too. It would be great if Fiona would tutor her friends and (even

more important) would learn from them too. At the moment she is a

bonehead with zero patience and not interested in doing things she

doesn't like to do. Our achievements to get her interested in normal

food backfire in the behavior department :-((

But then the holidays are over now and she goes to kindy again, I

hope that solves the problems partially.

Peace

Torsten

> Torsten,

> That is great about Fiona reading her first book!

> I was an only child for almost 6 years and also an early reader.

Books were

> my world of fantasy!

> And don't worry about her getting ahead of her friends in school---

when she

> gets too far ahead of them, she can always tutor the ones she

really likes so

> they can catch up with her! Also, hopefully, she will not be a

full head

> taller than the rest of the kids her age----I thought the other

kids were all

> my " tribe " and I was Chief ManyHaHa (no, I am not making that up!)

and would

> bop them on the head if they didn't behave like good little

Indians. Mom

> said I learned something new--and something mean--every day I went

to school

> and stopped being her little baby doll.

> Reading can be a lifelong friend and adventure. Perhaps Fiona will

one day

> become " Professor Fiona " . Or " General Fiona " ??

> Either way, I am sure you (and us, too) will enjoy the wait.

> Aunt B

>

>

>

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  • 1 month later...

,

What did they say about the azithromycin? I'm trying to decide whether to

fax a copy of the press release to Sian's peds at NCH in Sydney or not....

First day back at school for my girls, and they seem to be quite happy.

Probably time I got off line and made them do their homework, got Sian's neb

set up etc. I'm hoping that she'll do the neb and the homework at the same

time.

We got chooks yesterday! And they even laid eggs this morning (so cool!)

Much love to all

Mum to Cate 10yrs wocf and Sian 6yrs wcf, asthma, GERD and ADD?

Canberra Australia

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,

What did they say about the azithromycin? I'm trying to decide whether to

fax a copy of the press release to Sian's peds at NCH in Sydney or not....

First day back at school for my girls, and they seem to be quite happy.

Probably time I got off line and made them do their homework, got Sian's neb

set up etc. I'm hoping that she'll do the neb and the homework at the same

time.

We got chooks yesterday! And they even laid eggs this morning (so cool!)

Much love to all

Mum to Cate 10yrs wocf and Sian 6yrs wcf, asthma, GERD and ADD?

Canberra Australia

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,

What did they say about the azithromycin? I'm trying to decide whether to

fax a copy of the press release to Sian's peds at NCH in Sydney or not....

First day back at school for my girls, and they seem to be quite happy.

Probably time I got off line and made them do their homework, got Sian's neb

set up etc. I'm hoping that she'll do the neb and the homework at the same

time.

We got chooks yesterday! And they even laid eggs this morning (so cool!)

Much love to all

Mum to Cate 10yrs wocf and Sian 6yrs wcf, asthma, GERD and ADD?

Canberra Australia

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When they do a bronchoscopy on children, do they put them to sleep or

medicate them?

Is Rulide an antibiotic? Did the doctor say why he/she didn't want

to per her on Zithromax?

Sorry for all of the questions. I hope that you don't mind.

I'll be thinking of Eilish and you.

Gale

> Eilish had her clinic visit this morning. I mentioned Zithromax

that

> you all were mentioning. Anyway they have put her on Rulide. They

took

> more blood to test for whooping cough, pertussis and viruses. When

> she's having her sinuses done on the 7.11 the pulmonary dr. will

come in

> and do a broncoscopy at the same time.

>

>

> liam 8 wocf & Eilish 5 wcf

>

>

>

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