Re: Introducing P3

[Guest guest]

It is nice to hear of such great support .It is wonderful & you are doing

all the right stuff . A great mommy I am sure!!

LOVE & HUGS, grandmomBEV

Introducing P3

We spent 5 weeks in all in Perth 2 weeks at King womens hospital and

3 weeks at PMH Princess Margaret Hospital for kids.

When we got home he wasnt even 2kg! (4lb)

I've/We've had our ups n downs, but I feel bad when I talk about my

experience because there are people out there who didnt find out their child

had it til they were 1 or four. People with kids or relative or other

disorders responses were always competitive but I've found that people with

kis with CF are alot more sympathetic, cos they've been through it and more,

and sometimes less. But at the end of the day theres no competition.

3 days before I left PMH Craigs best mate's daughter came up with ehr litle

boy born 9 days later. We had got to know ea other when pregnant. She was

a single Mum at 20 and whenI said you didnt have to come all the way up here

, she said yes I did, I knew straight away. Jayden has CF too. We have

been very lucky to have ea other but I feel bad, cos I found out at 2 weeks

and Jayden was home for 5 weeks. Emma must've been going out of her head,

as you have probably heard it before, your Dr saying ' you're a new Mum, its

nothing!'

I am sorry to give you such a long version of my experience, but this is the

shortest I could get it down to.

Half the stuff I've heard you all writing, I dont even know about, but I

have heard at PA etc off the internet.

I ALSO feel terrible that it costs you all so much. Australia truly is a

lucky country, we have a government funded Medicare system. If you go into

a Public Hospital for anything it doesnt cost anything (excluding elective

surgery) Car accidents etc are funded by the transport accident commision,

people who dont work can get the DOLE unemployment benefits, whether they

try to get work or not. We have a single mothers pensionetc and kids born

with disorders ie CF have a health care card just like single mums and

people on the dole. So mos things only cost $3.70, If you order meds

through PMH you sometimes get 4 bottles for $3.70. Craigs work pays top

cover private health insurance. We had to pay $275 for his Neb and got $180

back off insurance. The gov also has a system where they pay for your

petrol every time you take your child to PMH. Im so sorry guys.

What I'd like to see is a screening program when you get married - genetic

testing. Althoug like , many kids over here are born with unmarried

parents. But it's food for thought.

is now 20 months weighs nearly 10kg and neddless to say is the cutest

thing Ive ever seen. He has me laughin all day long.

He has a best friend Chloe who has jsut turned 1, they are the same size and

she is now HEAVIER than him. The hardest part for me has been catching up

on weight! He's had bouts of vomiting, he's had two upper resp inf's, but

nothing serious yet! touch wood.

He has very thick cream (12g fat in 20ml) in every feed and bottle. It took

a long time for him to tolerate cream, he used to just vomit it back up

months ago. He also has Polyjoule (powdered cals) in his bottles. and is in

fact still on infant formula because it has more fat, vits and mins than

follow on formulas.

I get fed up with people commenting on him having a bottle at his age etc,

but hardly ever have to answer back, because I have some very faithful

friends who just snap when i get embarrassed. They end up embarrassing the

crap out of any smarty. They are also very respectful of all my wishes -

washing hands etc, they always ring to say if their kids are sick. Wish

Craigs family were that compliant!

Better sign off there, your eyes will be gettin sore

Thanks for such a great support group.

Lee and (20m wcf) Schaeche

Bunbury Wa

Australia

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

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[Guest guest]

Welcome Lee. Pattimae (almost 3 wcf) still takes her pediasure in a bottle.

When people comment on her being too old, even the dietician one time, I ask

them if it was their kid would they rather a bottle or a tube in the stomach.

After they get done appologizing, they usually say bottle. ;-)

Dawn mom of 4, 7 and under, the youngest wcf

[Guest guest]

Welcome Lee!

you and your family have quite a story. I hope all is well. My daughter is

five. she was dx'd at 9 months. We had a bumpy start too. (all the way up

until she was 2) This group is great, I'm sure you will add your knowledge and

experience to ours and help a newbie. feel free to visit our site at

http://groups.msn.com/TeamJane

Introducing P3

We spent 5 weeks in all in Perth 2 weeks at King womens hospital and 3

weeks at PMH Princess Margaret Hospital for kids.

When we got home he wasnt even 2kg! (4lb)

I've/We've had our ups n downs, but I feel bad when I talk about my experience

because there are people out there who didnt find out their child had it til

they were 1 or four. People with kids or relative or other disorders responses

were always competitive but I've found that people with kis with CF are alot

more sympathetic, cos they've been through it and more, and sometimes less. But

at the end of the day theres no competition.

3 days before I left PMH Craigs best mate's daughter came up with ehr litle

boy born 9 days later. We had got to know ea other when pregnant. She was a

single Mum at 20 and whenI said you didnt have to come all the way up here , she

said yes I did, I knew straight away. Jayden has CF too. We have been very

lucky to have ea other but I feel bad, cos I found out at 2 weeks and Jayden was

home for 5 weeks. Emma must've been going out of her head, as you have probably

heard it before, your Dr saying ' you're a new Mum, its nothing!'

I am sorry to give you such a long version of my experience, but this is the

shortest I could get it down to.

Half the stuff I've heard you all writing, I dont even know about, but I have

heard at PA etc off the internet.

I ALSO feel terrible that it costs you all so much. Australia truly is a

lucky country, we have a government funded Medicare system. If you go into a

Public Hospital for anything it doesnt cost anything (excluding elective

surgery) Car accidents etc are funded by the transport accident commision,

people who dont work can get the DOLE unemployment benefits, whether they try to

get work or not. We have a single mothers pensionetc and kids born with

disorders ie CF have a health care card just like single mums and people on the

dole. So mos things only cost $3.70, If you order meds through PMH you

sometimes get 4 bottles for $3.70. Craigs work pays top cover private health

insurance. We had to pay $275 for his Neb and got $180 back off insurance. The

gov also has a system where they pay for your petrol every time you take your

child to PMH. Im so sorry guys.

What I'd like to see is a screening program when you get married - genetic

testing. Althoug like , many kids over here are born with unmarried

parents. But it's food for thought.

is now 20 months weighs nearly 10kg and neddless to say is the cutest

thing Ive ever seen. He has me laughin all day long.

He has a best friend Chloe who has jsut turned 1, they are the same size and

she is now HEAVIER than him. The hardest part for me has been catching up on

weight! He's had bouts of vomiting, he's had two upper resp inf's, but nothing

serious yet! touch wood.

He has very thick cream (12g fat in 20ml) in every feed and bottle. It took a

long time for him to tolerate cream, he used to just vomit it back up months

ago. He also has Polyjoule (powdered cals) in his bottles. and is in fact still

on infant formula because it has more fat, vits and mins than follow on

formulas.

I get fed up with people commenting on him having a bottle at his age etc, but

hardly ever have to answer back, because I have some very faithful friends who

just snap when i get embarrassed. They end up embarrassing the crap out of any

smarty. They are also very respectful of all my wishes - washing hands etc,

they always ring to say if their kids are sick. Wish Craigs family were that

compliant!

Better sign off there, your eyes will be gettin sore

Thanks for such a great support group.

Lee and (20m wcf) Schaeche

Bunbury Wa

Australia

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

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[Guest guest]

What a story!! I would shoot the exwife! How mean!!

Welcome.

Rosemary in NY with 3 children (13, 10.6 and 6.6)

with CF. I have a dog named TOBI and have

coined the phrase " BREATHE DAMMIT "

[Guest guest]

Welcome Lee and Craig and of course (hey I like that name, it is also my

husband's name!)

We are glad to have you join us. I am , and I have 2 kids, Nick is 21

w/no cf and is 19 w/cf. She was diagnosed at 8 months after being sick

about 2 or 3 months. She is doing very well now and is in college.

Welcomes again and I know you'll enjoy the group. Thanks for sending 's

story, it was really a good one. Well I don't mean good for you all, but good

reading! sorry!

love,

M

[Guest guest]

Lee,

Abby is 20 months old and has cf. She also still has a bottle. We

don't care too much, as it helps to get more calories in her. We

also mix her ADEK vitamins and her Zantac in her bottle. Abby has

difficulty swallowing and some of the liquid enters her lungs. We

didn't know this until she was six months old. By that time, she had

phuemonia twice and severely damaged one of the lobes of her right

lung. Now, we must thicken all of her liquids.

Gale

> We spent 5 weeks in all in Perth 2 weeks at King womens

hospital and 3 weeks at PMH Princess Margaret Hospital for kids.

> When we got home he wasnt even 2kg! (4lb)

> I've/We've had our ups n downs, but I feel bad when I talk about my

experience because there are people out there who didnt find out

their child had it til they were 1 or four. People with kids or

relative or other disorders responses were always competitive but

I've found that people with kis with CF are alot more sympathetic,

cos they've been through it and more, and sometimes less. But at the

end of the day theres no competition.

> 3 days before I left PMH Craigs best mate's daughter came up with

ehr litle boy born 9 days later. We had got to know ea other when

pregnant. She was a single Mum at 20 and whenI said you didnt have

to come all the way up here , she said yes I did, I knew straight

away. Jayden has CF too. We have been very lucky to have ea other

but I feel bad, cos I found out at 2 weeks and Jayden was home for 5

weeks. Emma must've been going out of her head, as you have probably

heard it before, your Dr saying ' you're a new Mum, its nothing!'

> I am sorry to give you such a long version of my experience, but

this is the shortest I could get it down to.

> Half the stuff I've heard you all writing, I dont even know about,

but I have heard at PA etc off the internet.

> I ALSO feel terrible that it costs you all so much. Australia

truly is a lucky country, we have a government funded Medicare

system. If you go into a Public Hospital for anything it doesnt cost

anything (excluding elective surgery) Car accidents etc are funded

by the transport accident commision, people who dont work can get the

DOLE unemployment benefits, whether they try to get work or not. We

have a single mothers pensionetc and kids born with disorders ie CF

have a health care card just like single mums and people on the

dole. So mos things only cost $3.70, If you order meds through PMH

you sometimes get 4 bottles for $3.70. Craigs work pays top cover

private health insurance. We had to pay $275 for his Neb and got

$180 back off insurance. The gov also has a system where they pay

for your petrol every time you take your child to PMH. Im so sorry

guys.

> What I'd like to see is a screening program when you get married -

genetic testing. Althoug like , many kids over here are born

with unmarried parents. But it's food for thought.

> is now 20 months weighs nearly 10kg and neddless to say is the

cutest thing Ive ever seen. He has me laughin all day long.

> He has a best friend Chloe who has jsut turned 1, they are the same

size and she is now HEAVIER than him. The hardest part for me has

been catching up on weight! He's had bouts of vomiting, he's had two

upper resp inf's, but nothing serious yet! touch wood.

> He has very thick cream (12g fat in 20ml) in every feed and

bottle. It took a long time for him to tolerate cream, he used to

just vomit it back up months ago. He also has Polyjoule (powdered

cals) in his bottles. and is in fact still on infant formula because

it has more fat, vits and mins than follow on formulas.

> I get fed up with people commenting on him having a bottle at his

age etc, but hardly ever have to answer back, because I have some

very faithful friends who just snap when i get embarrassed. They end

up embarrassing the crap out of any smarty. They are also very

respectful of all my wishes - washing hands etc, they always ring to

say if their kids are sick. Wish Craigs family were that compliant!

> Better sign off there, your eyes will be gettin sore

> Thanks for such a great support group.

> Lee and (20m wcf) Schaeche

> Bunbury Wa

> Australia

>

>

>

>

>

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

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> - Looking for more? Try the new Yahoo! Search

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