Lots of stuff!

[Guest guest]

Hello, everyone... wow, what a lot of messages came in with this Digest.

Sorry I opened up such a can of worms with the milk jug thing. I hope you

all understand I was not complaining about having to keep two of everything

in the house... on the contrary, that's one of the easier things I can do to

help . hit it right on the head... when you aren't willing to

do the most basic things to combat a problem, you lose the right to bitch

about it. Yes, if this person was feeding her child whole milk and all the

stuff we give our kids, and the weight gain still wasn't there, I would be

more than sympathetic.

Funny, what Janet wrote the other day reminded me of a friend of mine from

high school. We lost touch and then I found her via the Internet last

spring. It turns out, she has a child who has Pervasive Development

Disorder. They thought he was autistic, but last summer they did some more

testing and now they have decided he is not. Anyway, I explained CF to her

& she explained PDD to me... and then we each wrote a note to the other

saying we couldn't imagine how hard it would be to go through what the other

was going through. Isn't that interesting? I am so thankful can run

and climb and tell me he loves me, and I can tell he is smart and I'm very

thankful for his very active brain. My friend is thankful she does not have

a ticking clock over her son's life (other than those risks everyone faces,

accidents, other illnesses such as cancer, etc.). Well, I thought it was

interesting that we each thought exactly the same thing and we admire each

other's strength and think it better than our own. In the same way, I read

what all of you are going through each day, and there are so many therapies

and drugs we haven't gotten into yet. I am grateful to have each extra day

without lung damage. I am thankful every day is not on antibiotics.

I know in the future I'll get back into my role as pharmacist, but I thank

God for every day doesn't have to go through all that.

, all I can say about that doctor who told you (or didn't tell you!)

that Meagan had spina bifida, is oh, my God. I can't believe such a dick is

even in the world of medicine. What was he thinking? And to not even tell

you directly, that is unthinkable, and then to tell you " Hey that other baby

is worse off " , what is that supposed to accomplish? When was in the

NICU for so long after his birth, so many babies came and went, most of them

with minor problems compared to , short visits when we felt like we

lived there forever, I cried when our friends got to go home, a blockage

which required only one surgery and no CF, a couple of 30-week preemies who

did pretty well in spite of coming into the world early. Then there was one

in the NICU the first week or so we were there with Down Syndrome which is

so hard on parents, being in Holland but unsure what your baby will be able

to accomplish in life, and her mom was so nice and gave us a copy of an

article from Dear Abby or something about giving special children to certain

Moms; and a set of triplets who were there three months before two went home

(the third baby died the month after we left, she had about every problem I

had ever heard of, I felt awful for her and what she went through). Of

course we were thankful didn't have to deal with those challenges,

but that is up to us to determine on our own when we are ready, not for a

doctor to tell us on the day of diagnosis. All we can do is hope for the

best for these other babies and their families. A county nurse came &

weighed once a week for his first year so I could keep track of his

weight gain and not have to take him to the ped to be weighed with all those

germs floating around. She also weighed a baby in the same neighborhood, on

the same day as . That baby had a G-tube, and never could eat

normally, and had all sorts of problems, was about 6 months older than

but much smaller. I always asked about the baby and how they were

doing and prayed things would get better. Well, the baby ended up dying,

and I cried when I found out, but all we can do is pray. I know the other

baby is in a better place and has no more pain.

I can't imagine a medical " professional " even thinking of telling someone

life could be worse. I hope he loses his license. Someday, somehow, he'll

get his. Maybe he will be trapped in an earthquake with children with

special needs and have to take care of all of them and get to know how

different and special every child is while wondering if they would all be

saved.

Well, I have rambled on enough. Thanks for this quote... it really made me

laugh.

> " As I was lying in my bed last night, relaxing and looking up at the stars

>and the moon, I thought to myself... " what the hell happened to my roof? "

Hope you all are having a great Monday. Sorry for my rambling. I hope the

weather gets better soon for everyone having breathing problems from it, CF

or asthma. Seems like it is putting everyone through the wringer!

I am off to the Mall of America with my neighbor tomorrow. Our hubbies are

taking vacation so they can stay with the kiddies. We got a hotel with a

jacuzzi and we are taking vodka and cranberry juice, M & Ms, and sour gummi

worms. Oh, yeah, and somewhere in there we will be doing the rest of our

Christmas shopping. I can't even tell you all how excited we are. I will

look for samples of donkey chias with big butts to send to our artists.

They have everything at the MoA, right?

Hugs to everyone,

Elaine

PS Here's another question for everyone. I always wonder (and worry, of

course, or I wouldn't be me) about the clubbing of fingers and toes. ,

you mentioned your daughter is starting to get clubbing on her toes. I am

wondering, how many of you are seeing this part of the CF puzzle, and at

what age did it start showing up? I wonder if it's linked to anything, like

said, her daughter has the gut problems more than lung problems, like

so far.

[Guest guest]

Hi Elaine,

Hope you have a great time at MoA. Have a vodka and whatever for me! My

hairdresser is from that area, and always tells me what a great place it is.

Please don't think that I thought you were complaining about the two milk

thing. I understood exactly what you meant. It is one of those, " walk a

mile in my shoes " before you complain about your own shoes. And Especially

when what you are complaining about is within your own control. (This is

why I get so annoyed about my mother-in-law complaining about her insulin

shots for diabetes. Yet she scarfs down all of the doughnuts and other

sugar she can get her hands on. Well, duh!) That is why this list is so

nice; we can all appreciate each other's shoes.

As far as clubbing. Well, it is considered indicative of lung problems,

that is, insufficient oxygen in general. It is not specific to cf, but

obviously occurs very frequently in cf'ers, since insufficient oxygen is a

problem for them. Somehow the body does this when it has insufficient

oxygen.

has had mild clubbing since she was tiny. As you may know, she was

not diagnosed until she was in first grade. One of the things which came

together for me when she was diagnosed was the clubbing. I had always

thought that her fingers and toes were oddly shaped. And whenever I thought

this that I would immediately think, " I must be nuts. Fingers are fingers! "

I never, ever mentioned this to a soul. Not even to my husband. I mean,

what was I going to say, " Hey, doctor, my kid's fingers seem really round. "

Right, lady, the door is that way please!!

Happy Halloween!

(Mother of , 10 wcf, and , 2, both making me nuts right now.)

Lots of stuff!

>

>

> Hello, everyone... wow, what a lot of messages came in with this Digest.

> Sorry I opened up such a can of worms with the milk jug thing. I hope you

> all understand I was not complaining about having to keep two of

everything

> in the house... on the contrary, that's one of the easier things I can do

to

> help . hit it right on the head... when you aren't willing

to

> do the most basic things to combat a problem, you lose the right to bitch

> about it. Yes, if this person was feeding her child whole milk and all

the

> stuff we give our kids, and the weight gain still wasn't there, I would be

> more than sympathetic.

>

> Funny, what Janet wrote the other day reminded me of a friend of mine from

> high school. We lost touch and then I found her via the Internet last

> spring. It turns out, she has a child who has Pervasive Development

> Disorder. They thought he was autistic, but last summer they did some

more

> testing and now they have decided he is not. Anyway, I explained CF to

her

> & she explained PDD to me... and then we each wrote a note to the other

> saying we couldn't imagine how hard it would be to go through what the

other

> was going through. Isn't that interesting? I am so thankful can

run

> and climb and tell me he loves me, and I can tell he is smart and I'm very

> thankful for his very active brain. My friend is thankful she does not

have

> a ticking clock over her son's life (other than those risks everyone

faces,

> accidents, other illnesses such as cancer, etc.). Well, I thought it was

> interesting that we each thought exactly the same thing and we admire each

> other's strength and think it better than our own. In the same way, I

read

> what all of you are going through each day, and there are so many

therapies

> and drugs we haven't gotten into yet. I am grateful to have each extra

day

> without lung damage. I am thankful every day is not on

antibiotics.

> I know in the future I'll get back into my role as pharmacist, but I thank

> God for every day doesn't have to go through all that.

>

> , all I can say about that doctor who told you (or didn't tell

you!)

> that Meagan had spina bifida, is oh, my God. I can't believe such a dick

is

> even in the world of medicine. What was he thinking? And to not even

tell

> you directly, that is unthinkable, and then to tell you " Hey that other

baby

> is worse off " , what is that supposed to accomplish? When was in

the

> NICU for so long after his birth, so many babies came and went, most of

them

> with minor problems compared to , short visits when we felt like we

> lived there forever, I cried when our friends got to go home, a blockage

> which required only one surgery and no CF, a couple of 30-week preemies

who

> did pretty well in spite of coming into the world early. Then there was

one

> in the NICU the first week or so we were there with Down Syndrome which is

> so hard on parents, being in Holland but unsure what your baby will be

able

> to accomplish in life, and her mom was so nice and gave us a copy of an

> article from Dear Abby or something about giving special children to

certain

> Moms; and a set of triplets who were there three months before two went

home

> (the third baby died the month after we left, she had about every problem

I

> had ever heard of, I felt awful for her and what she went through). Of

> course we were thankful didn't have to deal with those challenges,

> but that is up to us to determine on our own when we are ready, not for a

> doctor to tell us on the day of diagnosis. All we can do is hope for the

> best for these other babies and their families. A county nurse came &

> weighed once a week for his first year so I could keep track of his

> weight gain and not have to take him to the ped to be weighed with all

those

> germs floating around. She also weighed a baby in the same neighborhood,

on

> the same day as . That baby had a G-tube, and never could eat

> normally, and had all sorts of problems, was about 6 months older than

> but much smaller. I always asked about the baby and how they were

> doing and prayed things would get better. Well, the baby ended up dying,

> and I cried when I found out, but all we can do is pray. I know the other

> baby is in a better place and has no more pain.

>

> I can't imagine a medical " professional " even thinking of telling someone

> life could be worse. I hope he loses his license. Someday, somehow,

he'll

> get his. Maybe he will be trapped in an earthquake with children with

> special needs and have to take care of all of them and get to know how

> different and special every child is while wondering if they would all be

> saved.

>

> Well, I have rambled on enough. Thanks for this quote... it really made

me

> laugh.

> > " As I was lying in my bed last night, relaxing and looking up at the

stars

> >and the moon, I thought to myself... " what the hell happened to my roof? "

>

> Hope you all are having a great Monday. Sorry for my rambling. I hope

the

> weather gets better soon for everyone having breathing problems from it,

CF

> or asthma. Seems like it is putting everyone through the wringer!

>

> I am off to the Mall of America with my neighbor tomorrow. Our hubbies

are

> taking vacation so they can stay with the kiddies. We got a hotel with a

> jacuzzi and we are taking vodka and cranberry juice, M & Ms, and sour gummi

> worms. Oh, yeah, and somewhere in there we will be doing the rest of our

> Christmas shopping. I can't even tell you all how excited we are. I will

> look for samples of donkey chias with big butts to send to our artists.

> They have everything at the MoA, right?

> Hugs to everyone,

> Elaine

>

> PS Here's another question for everyone. I always wonder (and worry, of

> course, or I wouldn't be me) about the clubbing of fingers and toes.

,

> you mentioned your daughter is starting to get clubbing on her toes. I am

> wondering, how many of you are seeing this part of the CF puzzle, and at

> what age did it start showing up? I wonder if it's linked to anything,

like

> said, her daughter has the gut problems more than lung problems,

like

> so far.

>

> > This is a secular 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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>

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>

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

>

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>

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>

>

>

[Guest guest]

Dear ,

In one simple line you have summed up the entire feeling of being a parent

of child, with or without, CF or any other ailment.

The " big picture " makes all the hassles, the

> sinus surgeries etc., easier to deal with. She's a great kid, and I enjoy

> her every minute of every day.

>

Amen.