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Hi Jeanne welcome to the group.

Congratulations....well I guess not quite yet haa?

I was just wondering if I could ask....did the parents of this baby know he

has CF?

Is that the reason that they may not want him and did you know he had CF

before you became a foster parent to him?

My name is . I'm married and have 2 children. has CF and he's 5

yrs. old.

Alyssa doesn't have CF, although sometimes I think she is a carrier, and she

is 6 but will be 7 in April. My son was diagnosed by the blood screening

they did at birth. At our hospital this is one of the mandatory illnesses

they check for. Thank goodness he had a common gene for CF. If not we'd

probably still be going rounds at the hospital since CF has never been in our

family until now.

When he was born and came home from the hospital, every time I'd feed him he

would

not only throw up but it would go 5 - 10 feet across the room. No kidding.

I tried telling the Doctors about it but they said it's normal for babies to

spit up. They didn't understand or didn't believe what I was saying. When

the blood came back positive for CF, at least one Delta F508 Gene, they did

the sweat test and that was positive. So, and also with the poops they were

like a couple of the other kids on this group just recently mentioned. BIG,

BULKY, and LOADS of poop at 1 TIME. POOP

EVERYWHERE! They switched him to a formula called Progestamil. It's a

predigested formula so it's easier on the infants.

Anyway Good luck with the adoption if that's what you end up doing.

from Pennsylvania

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I realized that with my last post I neglected to give my name. In

any case, I am Jeanne and currently a foster mother to a 10 month old

boy with cf who my husband and I are hoping to adopt. Some people

think we are crazy (both my husband and I are in our mid-40's but

married later in life and have no children of our own), but most have

been very supportive. I am a nurse and used to work at Children's

Hospital in Boston when I was younger, but not with children with cf

which has made dealing with his medical needs a little easier. He

has had pneumonia x3 since birth, recently cultured positive for

staff and pseudomonos so is on oral Augmentin and TOBI and has also

had problems with weight gain. He is only between the 5th to 10th

percentile. In any case, I am glad I found this group so I can learn

as much as I can about cf and what our future will hopefully hold.

We are obviously taking this on willingly which many think we are

crazy to do but he is such a beautiful and great little boy that I

think the effort will be well worth it.

Jeanne 10mos boy wcf

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I don't think you are crazy at all. There needs to be people who are

willing to take a chance on kids who are medically fragile.

Dawn mom of 4, 6 and under, the youngest wcf

RE-introduction

> I realized that with my last post I neglected to give my name. In

> any case, I am Jeanne and currently a foster mother to a 10 month old

> boy with cf who my husband and I are hoping to adopt. Some people

> think we are crazy (both my husband and I are in our mid-40's but

> married later in life and have no children of our own), but most have

> been very supportive. I am a nurse and used to work at Children's

> Hospital in Boston when I was younger, but not with children with cf

> which has made dealing with his medical needs a little easier. He

> has had pneumonia x3 since birth, recently cultured positive for

> staff and pseudomonos so is on oral Augmentin and TOBI and has also

> had problems with weight gain. He is only between the 5th to 10th

> percentile. In any case, I am glad I found this group so I can learn

> as much as I can about cf and what our future will hopefully hold.

> We are obviously taking this on willingly which many think we are

> crazy to do but he is such a beautiful and great little boy that I

> think the effort will be well worth it.

> Jeanne 10mos boy wcf

>

>

>

> 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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What makes you think your daughter is a carrier? Being a carrier isnt

detectable through them having a cough or anything, I was just wondering.

Liam 7 wocf & Eilish 4wcf

/ySSFAA/b0SolB/TM

> ---------------------------------------------------------------------~->

>

> 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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Jeanne,

I think it is GREAT that you are taking it on! He is a very lucky little boy.

But can I ask what happen to his biological parents? Could they not handle

the CF? Deb A

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You and your husband are wonderful people!

Best of luck:)

Stein..mom to CF (20 mo) & Tori wo/CF in mass.

RE-introduction

I realized that with my last post I neglected to give my name. In

any case, I am Jeanne and currently a foster mother to a 10 month old

boy with cf who my husband and I are hoping to adopt. Some people

think we are crazy (both my husband and I are in our mid-40's but

married later in life and have no children of our own), but most have

been very supportive. I am a nurse and used to work at Children's

Hospital in Boston when I was younger, but not with children with cf

which has made dealing with his medical needs a little easier. He

has had pneumonia x3 since birth, recently cultured positive for

staff and pseudomonos so is on oral Augmentin and TOBI and has also

had problems with weight gain. He is only between the 5th to 10th

percentile. In any case, I am glad I found this group so I can learn

as much as I can about cf and what our future will hopefully hold.

We are obviously taking this on willingly which many think we are

crazy to do but he is such a beautiful and great little boy that I

think the effort will be well worth it.

Jeanne 10mos boy wcf

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Jeanne,

Well he is a very lucky little boy to have you two has parents. I hope you

get to keep him. I work with to coworkers that have foster kids before and

adopted it takes very special people to do what you are doing. I think it is

GREAT! Deb A

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> Jeanne,

> I think it is GREAT that you are taking it on! He is a very lucky

little boy.

> But can I ask what happen to his biological parents? Could they not

handle

> the CF? Deb A

Deb,

cf had nothing to do with the our " son " being in foster care. His

parents are stuggling with addiction and he was born heroin

addicted. That is actually how they found out he had cf. He lost a

lot of weight after he was born and they didn't know why and started

a work-up of causes of wgt loss in newborns. His cf test came back

positive but so did his toxic screen for heroin which was probably

the real reason he lost wgt as he was in withdrawal. His parents are

still hoping to get him back but have not made much progress with

getting their act together and with all of the special needs of a

child with cf, it is unlikely that they will be able to manage. They

can barely manage to feed him so far, never mind CPT, nembulizer

treatments, meds, MD appointments, etc. etc... The state has custody

at present and they are have a long way to go to prove that they

could provide a safe environment for him.

Jeanne

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