-----Original Message-----
From: fullmer@... <fullmer@...>
To: farmer@... <farmer@...>; biperkin@... <biperkin@...>;
jokes@... <jokes@...>
Date: Wednesday, March 24, 1999 11:28 AM
Subject: FW: Interesting infor


>
>
>
>> INTERESTING INFORMATION
>> >
>> >- The average chocolate bar has 8 insects' legs in it.
>> >- The average human eats 8 spiders in their lifetime at night.
>> >- A cockroach can live nine days without its head before it starves
>> to>death.
>> >- A rhinoceros horn is made of compacted hair.
>> >- The shortest war in history was between Zanzibar and England in 1896.
>> Zanzibar surrendered after 38 minutes.
>> >- A polar bear's skin is black. Its fur is not white, but actually
clear.
>> >- Elvis had a twin brother named Garon, who died at birth, which is why
>> Elvis' middle name was spelled Aron; in honor of his
>> brother.
>> >- Dueling is legal in Paraguay as long as both parties are
>> registered>blood donors.
>> >- Donald Duck comics were banned in Finland because he doesn't wear
>> pants.
>> >- More people are killed by donkeys annually than are killed in
>> plane>crashes.
>> >- Stewardesses is the longest word typed with only the left hand.
>> >- Shakespeare invented the word "assassination" and "bump."
>> >- Marilyn Monroe had six toes.
>> >- If you keep a Goldfish in the dark room, it will eventually turn
white.
>> >- Women blink nearly twice as much as men.
>> >- Right-handed people live, on average, nine years longer
>> than>left-handed>people do.
>> >- The sentence "the quick brown fox jumps over the lazy dog" uses every
>> letter  in the English language.
>> >- The name of all the continents end with the same letter that
>> they>start with.
>> >- The word "lethologica" describes the state of not being able
>> to>remember the word
>> you want. (Now, if I could only remember the
>> word"lethologica" ...)
>> >- TYPEWRITER, is the longest word that can be made using the  letters on
>> only one row of the keyboard.
>> >- If the population of China walked past you in single file,  the
>> line>would never end
>> because of the rate of reproduction.
>> >- The word racecar and kayak are the same whether they are  read left
>> to>right or right to left.
>> >- A snail can sleep for 3 years.
>> >- American Airlines saved $40,000 in 1987 by eliminating one olive from
>> each salad
>> served in first-class.
>> >- China has more English speakers than the United States.
>> >- The electric chair was invented by a dentist.
>> >- Vatican City is the smallest country in the world, with a  population
>> of 1000 and
>> a size 108.7 acres.
>> >- The longest town name in the world has 167 letters.
>> >- Did you know you share your birthday with at least 9 million  other
>> people  in  the world.
>> >- "I am." is the shortest complete sentence in the English  language.
>> >- The longest word in the English language is 1909 letters  long and it
>> refers  to a distinct
>> part of DNA.
>> >- No president of the United States was an only child.
>> >- The Eisenhower interstate system requires that one-mile in  every five
>> must be straight.
>> These straight sections are  usable as airstrips in times
>> of war or other emergencies.
>>
>

-----Original Message-----
From: MagicWench@... <MagicWench@...>
Date: Thursday, March 18, 1999 11:29 AM
Subject: 3 lil Facts. hehe!


>
> My mother buried three husbands,
>and two of them were just napping.
>
> When a man steals your wife,
> there is no better revenge than to let him keep her.
>
> Just think,
> if it weren't for marriage,
>men would go through life thinking  they had no faults at all.
>
>
>heheheh!
>
>
>
>
>
>
>
>

-----Original Message-----
From: Bill & Marge <billgregory@...>
To: debbie daniels <dcd@...>; Jack & Geri Vital
<vital3@...>; Emma christensen <nanookone@...>; John & Angi
Strong <jaade1@...>; Andy & Lindy Christensen <kodiak@...>;
Vickie & John Gregory <msgee@...>
Date: Sunday, March 14, 1999 5:50 PM
Subject: Fw: *** Check Your Computer!!! ***


>
>-----Original Message-----
>From: The Internet Crew <thecrew@...>
>To: To All Carolina Connection Clients <To All Carolina Connection Clients>
>Date: Friday, March 12, 1999 9:17 AM
>Subject: *** Check Your Computer!!! ***
>
>
>>*** Important ***
>>Carolina Connection has had several people unknowingly send a happy99.exe
>attachment around our network. It's not their fault totally, but it's
>important that we catch things like this early before it becomes a BIGGER
>concern. The "Happy99" attachment is an email worm (or virus derivative)
>that executes damaging code when you run the program. You see a nice
>fireworks display and that's it (you think). In reality, it writes and
>renames some files to your harddrive which causes this attachment
>(happy99.exe) to be sent to everyone you send mail to. In theory, they open
>the attachment, and poof, it happens to them and over and over...
>>
>>What does that mean to you:
>>
>>1st things first:
>>Please check your computer for the following files: "SKA.EXE" or
"SKA.DLL".
>For most people (Windows 95/98/NT users), Click START, scroll up to FIND,
>Then Click "FILES or FOLDERS", Type SKA.EXE in the box and make sure it's
>set to search your whole hardrive.
>>If you have either of these files you are infected with this worm. Found
>them? DON'T PANIC, Just follow the instructions written at Symantec (the
>guys that make Norton Anti-Virus software) to remove the files and rename
>the ones you need to keep.
>>http://www.symantec.com/avcenter/venc/data/happy99.worm.html
>>This link gives you a very detailed explanation of this worm and how to
>clean it from your computer.
>>
>>2nd:
>>If the future: if you receive a message with no subject and just the
>attachment "happy99.exe" from one of your friends. First off, don't open
the
>attachment! Reply to the author of the message, and tell them that their
>computer is infected with this worm (because they won't know it unless you
>tell them). Maybe even forwarding them this message would help.
>>
>>3rd thing to do: (from the Symantec site)
>>This worm and other trojan-horse type programs demonstrate the need to
>practice safe computing. One should not execute any executable-file
>attachment (EXE, SHS, MS Word or MS Excel file) that comes from an email or
>a newsgroup article from an untrusted source.
>>If you have those files and may need a little help, call our tech support
>desk at 636-9011. They will try to help you over the phone. Please remember
>that our tech-line is a limited staffed resource so ONLY call if you have
>either of those files and also remember that you may have to call a few
>times to get through. DO NOT call if just want more info on this, please
see
>the website above.
>>Sincerely,
>>The Internet Crew
>>thecrew@...
>>
>>
>>
>>
>
>

I know what you mean about giving the shots...and the days when you REALLY
could...th elittle buggers.  But let me add this.  Paramedics cannot give the
shot!  How do I know this?  I went to a first aid class because I teach at a
pre-school...and we all had questions pertaining to specifics with out school
environment.  Well, my son attends thw school I teach at and I had long since
told them....if necessary, call 911 and they can give the shot.  At this class,
I asked about that and they can't.  If it is not a medication that they carry on
board, they are not to administer it.  They can help someone else give
themselves what they need ( help put the nitroglicerin pill in mouth, help put
an asthsma nebulizer up to mouth, etc.) but they cannot do that.  He did
say...if it were ife and death, I would probably do it anyway....but it could
mean losing liscense.  this is the case in the state of ALabama.  It differs
from state to state...so it might be worth checking on.  Especially for
caregivers when you leave the solu-cortef.
-Debbi

P. S.  Someone photocopied that book for me and it is wonderful.  I think every
hopsital should have copies...just in case.  We went to the local library trying
to find anything we could...and we would look adrenal problems and see pictures
of kids with Cushing's Syndrome. And you feel torn..."thank God he is alive. but
is this what is going to happen to my baby??"
     -----Original Message-----
     From: Angela Strong <jaade1@...>
     To: CAHsupport <CAHsupport@onelist.com>
     Date: Tuesday, March 09, 1999 1:08 PM
     Subject: [CAHsupport] (no subject)


     Hi there!
          I was actually shown how to give them the shot, but to tell the truth,
I'm not able to verbalize the reasons I don't want to have to do that.  (And
fear isn't the reason, there are some days I could do it just because they've
ticked me off!  LOL!!)  I can get them anywhere fast enough, although in some
freak emergency I can tell the paramedics what to do.  In fact, after this last
surgery, I CAN DO ANYTHING!!!  LOL!  From my limited understanding again, it's
not their immune system that is compromised (however it is the same result).  I
have a wonderful book written in understandable English I will quote from here:

     "In CAH, one of the adrenal enzymes is missing.  This particular enzyme
controls the production of both cortisol and the salt-retaining hormone."  "The
body usually responds to sickness (fever, infection, or other illness) and
physical injury by releasing more cortisol.  This helps to boost the blood sugar
and blood pressure, aiding recovery.  In CAH, the adrenal glands are unable to
make more cortisol.  Therefore the body is less protected, and the effects of
illness or injury may be more severe.  Adrenal crises can be readily prevented
(see ......)."  Then it goes on to tell about meds.  This is the reason why you
would triple the meds in emergencies, because the body would normally do that,
but in CAH it just can't.

     This is actually a great book.  It's called "Your Child with Congenital
Adrenal Hyperplasia" by G.L. Warne.  (A hospital in Melbourne funded it and a
doctor in NC gave it to me when the girls were about 4, 4 years too late for me,
but it's been helpful to have it around for the girls.)  It doesn't talk down to
you, but at the same time, it doesn't assume that you are some med student
either.  (Although, now I'm sure I could be!!!)

     Hope everyone is feeling better at your homes!                        Angi

Hi there!
      I was actually shown how to give them the shot, but to tell the truth, I'm
not able to verbalize the reasons I don't want to have to do that.  (And fear
isn't the reason, there are some days I could do it just because they've ticked
me off!  LOL!!)  I can get them anywhere fast enough, although in some freak
emergency I can tell the paramedics what to do.  In fact, after this last
surgery, I CAN DO ANYTHING!!!  LOL!  From my limited understanding again, it's
not their immune system that is compromised (however it is the same result).  I
have a wonderful book written in understandable English I will quote from here:

"In CAH, one of the adrenal enzymes is missing.  This particular enzyme controls
the production of both cortisol and the salt-retaining hormone."  "The body
usually responds to sickness (fever, infection, or other illness) and physical
injury by releasing more cortisol.  This helps to boost the blood sugar and
blood pressure, aiding recovery.  In CAH, the adrenal glands are unable to make
more cortisol.  Therefore the body is less protected, and the effects of illness
or injury may be more severe.  Adrenal crises can be readily prevented (see
......)."  Then it goes on to tell about meds.  This is the reason why you would
triple the meds in emergencies, because the body would normally do that, but in
CAH it just can't.

This is actually a great book.  It's called "Your Child with Congenital Adrenal
Hyperplasia" by G.L. Warne.  (A hospital in Melbourne funded it and a doctor in
NC gave it to me when the girls were about 4, 4 years too late for me, but it's
been helpful to have it around for the girls.)  It doesn't talk down to you, but
at the same time, it doesn't assume that you are some med student either. 
(Although, now I'm sure I could be!!!)

Hope everyone is feeling better at your homes!                        Angi

-----Original Message-----
From: Lnxwyf@... <Lnxwyf@...>
To: Chray@... <Chray@...>; Elena_jimenez@...
<Elena_jimenez@...>; Malone@... <Malone@...>;
Wobmuc@... <Wobmuc@...>; VMolnar@...
<VMolnar@...>
Date: Monday, March 01, 1999 9:16 PM
Subject: (no subject)


>
>======================
>Blessed be the little children ....
>
>One Sunday in a Midwest city a young child was "acting up" during the
>morning worship hour. The parents did their best to maintain some sense of
>order in the pew but were losing the battle. Finally the father picked the
>little fellow up and walked sternly up the aisle on his way out. Just
before
>reaching the safety of the foyer the little one called loudly to the
>congregation, "Pray for me! Pray for me!"
>
>====================================================
>A daddy was listening to his child say his prayer "Dear Harold". At this,
>
>dad interrupted and said, "Wait a minute, "How come you called God,
>"Harold"? The little boy looked up and said, "That's what they call Him in
>church. You know the prayer we say, "Our Father, who art in Heaven, Harold
>be Thy name."
>
>====================================================
>And this particular four-year-old prayed: "And forgive us our trash baskets
>as we forgive those who put trash in our baskets."
>
>===================================================
>During the minister's prayer one Sunday, there was a loud whistle from one
>of the back pews. Gary's mother was horrified. She pinched him into
silence,
>and after church, asked: "Gary, whatever made you do such a thing?" Gary
>answered soberly: "I asked God to teach me to whistle... And He just then
>did!"
>
>====================================================
>One night Mike's parents overheard this prayer. "Now I lay me down to rest,
>and hope to pass tomorrow's test, if I should die before I wake, that's one
>less test I have to take."
>
>===================================================
>A five-year-old said grace at family dinner one night. "Dear God, thank you
>for these pancakes." When he concluded, his parents asked him  why he
>thanked God for pancakes when they were having chicken. He smiled and said,
>"I thought I'd see if He was paying attention tonight."
>
>=====================================================
>A little boy's prayer. "Dear God, please take care of my daddy and my mommy
>and my sister and my brother and my doggy and me. Oh, please take care of
>yourself, God. If anything happens to you, we're gonna be in a big mess."
>
>====================================================
>A rabbi said to a precocious six-year-old boy: "So your mother says your
>prayers for you each night? Very commendable. What does she say?" The
little
>boy replied, "Thank God he's in bed!"
>
>======================================================
>A woman invited some people to dinner. At the table, she turned to her
>six-year-old daughter and said, "Would you like to say the blessing?" I
>wouldn't know what to say," the little girl replied. "Just say what you
hear
>Mommy say, " the mother said. The little girl bowed her head and said,
"Dear
>Lord, why on earth did I invite all these people to dinner?"
>
>======================================================
>Johnny had been misbehaving and was sent to his room. After a while he
>emerged and informed his mother that he had thought it over and then said a
>prayer. "Fine," said the pleased mother. "If you ask God to help you not
>misbehave, He will help you."
>"Oh, I didn't ask Him to help me not misbehave," said Johnny. "I asked Him
>to help you put up with me."
>
>======================================================
>A little boy was overheard praying: "Lord, if You can't make me a better
>boy, don't worry about it. I'm having a real good time like I am!"
>
>======================================================
>Many people will walk in and out or your life,
>but only true friends will leave footprints in your heart.
>
>To handle yourself, use your head,
>To handle others, use your heart.
>
>Anger is only one letter short of danger.
>
>If someone betrays you once, it's his fault.
>If he betrays you twice, it's your fault.
>
>Great minds discuss ideas;
>Average minds discuss events;
>Small minds discuss people.
>
>God Gives every bird it's food, but He does not throw it into it's nest.
>
>He who loses money, loses much;
>He who loses a friend, loses more;
>He who loses faith, loses all.
>
>Beautiful young people are acts of nature,
>but beautiful old people are works of art.
>
>Learn from the mistakes of others.
>You can't live long enough to make them all yourself.
>
>The tongue weighs practically nothing, but so few people can hold it.
>
>Friends, you and me..you brought another friend...and then
>there were 3....we started our group.....Our circle of friends......and
>like that circle.......there is no beginning........there is no end.
>
>====
>
>

We havenot not been taught how to give the shot.  Whenever I have asked, our
endo said it wasn't necessary and we could get to a doctor quickly enough.
I am not as comfortable with that as I used to be.  I think I should know
how.
-Debbi
-----Original Message-----
From: bsashmead@... <bsashmead@...>
To: CAHsupport@onelist.com <CAHsupport@onelist.com>
Date: Monday, March 08, 1999 4:17 PM
Subject: [CAHsupport] flu


>From: bsashmead@...
>
>Thanks for your last comments, Angie
>
>Erin had the flu when she was 15 mnths.  She got it from a gril I was
tending at the time.  The little girl would throw up maybe once a day so her
parents didn't thing anything was wrong.  However when Erin got it, it was a
differnent story. She throw up 4 times in a hour period the first day.  She
also had a fever and then she started to get lathargic.  We did have to give
her the shoot and we were in touch with the Endo Dr every 24 hrs to assess
her situation and see if she need to be brought into PCMC.  It was scary!!
>
>From my understanding, kids with CAH have a lower immune system.  They are
more prone to "bugs".  It can also affects them in more dramatic ways -
because of thier body not being able to produce it's own cortef.  That is
why we give stress doses when they are sick.
>
>We had to give Erin the shot after we tried twice to get her meds down
without any luck  IT was a hard thing to do, but at the same time, I'm glad
that we know how to give her a shot for emergencies.  Have you learned how
to give the shot?
>
>Hope everyone starts feeling better at your house.  Hope this helped.
>
>Tami
>
>------------------------------------------------------------------------
>Is ONElist important to you?  Has it changed your life?
>http://www.onelist.com
>Come visit our new web site and share with us your stories

Thanks for your last comments, Angie

Erin had the flu when she was 15 mnths.  She got it from a gril I was tending at
the time.  The little girl would throw up maybe once a day so her parents didn't
thing anything was wrong.  However when Erin got it, it was a differnent story.
She throw up 4 times in a hour period the first day.  She also had a fever and
then she started to get lathargic.  We did have to give her the shoot and we
were in touch with the Endo Dr every 24 hrs to assess her situation and see if
she need to be brought into PCMC.  It was scary!!

From my understanding, kids with CAH have a lower immune system.  They are more
prone to "bugs".  It can also affects them in more dramatic ways - because of
thier body not being able to produce it's own cortef.  That is why we give
stress doses when they are sick.

We had to give Erin the shot after we tried twice to get her meds down without
any luck  IT was a hard thing to do, but at the same time, I'm glad that we know
how to give her a shot for emergencies.  Have you learned how to give the shot?

Hope everyone starts feeling better at your house.  Hope this helped.

Tami

Well...we just had a minor flu bug go through the house.  My non-cah
daughter had fever for 3 days.  Then two days later, Kyle woke up and threw
up twice.  AFter dealing with that, we found he had 102.5 fever.  Gave
stress dose, threw that up, and tried one more time with a stress dose, and
no more vomitting.....but still fever.  Meanwhile, I have the fever, too.

Now for my thoughts...I wonder if Kyle threw up because his levels were
getting out of whack?  He acts like he feels better than I do, but he is the
only one that threw up.  When I called our ped about whether or not we
should come in for the shot, he said to try one more oral dose (that was the
second try I mentioned) first.  It all turned out okay, but I still feel
like I should have been able to give him the shot at home and not worry
about keeping it down a second time!!
-Debbi

Hi Ya'll!
      (Oops, I just let that southern slip right in, didn't I?)  Tami, you are
talking to the queen of guilt!  The first eight years (until after the second
surgery for us and meeting a fantastic woman surgeon) I spent wondering what I
did that was so bad that my daughters would be burdoned with such a punishment?!
Well, I've come to the conclusion that HE (any He that you believe in will work
here) does not punish innocent children.  This is just another obstacle to
overcome that will make them strong women!  I occasionally still feel guilty
sometimes, but those feelings pass quicker now.  (And I just pass the buck to my
husband!  LOL!)
      As for the meds.  At first we were 8am, 4pm, and then 12 midnight.  And
yes, we were religious about staying up until then.  Then around 6 years old, we
moved and got a new doctor with a new theory!  He said bedtime was good enough. 
Don't think I didn't kiss the ground this guy walked on!!!  We monitored their
bloodwork carefully for a while and there was NO effect.  Now, I imagine if they
were to become ill, I would go back to every 8 hours for at least that small
amount of time.  It depends on your doctor.  But for the bone age, you do want
to be consistent about the meds.  If you miss one, no big deal.  If you
consistently miss one,  BIG DEAL.  (And I'm not talking about forgetting the
4:00 and taking it at 6:00.  I'm talking about not taking it at all.)   I am
always forgetting 4:00 and taking it later.  (It was so bad that when I moved
away from my mom to here, she would call us to remind us!  LOL!)  So far, their
health is fine.  But kids grow and their needs change.  That's why our bone ages
are advanced.  (This isn't terribly uncommon, so I've been told.)  Anyway, my
point is, you are not a bad mom if the labs aren't perfect.  They will NOT
always be perfect, that's why we see these doctors as often as we do.  Take a
minute and give yourself a break.  Yeah, I know, easier said than done.  But
well worth the effort.
      Well ladies, 4th grade homework awaits me.  I could've sworn I did this
when I was 10, but whatever...!    Oh yeah, I think I'm going to stop buying
hamburgers and save up for a new Suburban!  LOL!

Angi

BTW...a bone age is a simple x-ray of the writst.  Not a big deal at all!

And I asked our endo to give me a prescription for it.  EMLA cream.  It has
lidocaine in it.  She asked me if I thought it would help...andI said..I
hope so!!  It really has reduced the stress of the situation.  It was 30
dollars for the tube and we are still using it 2 years later...guess I
better check the expiration date!
-Debbi
-----Original Message-----
From: bsashmead@... <bsashmead@...>
To: CAHsupport@onelist.com <CAHsupport@onelist.com>
Date: Wednesday, March 03, 1999 7:10 PM
Subject: [CAHsupport] (no subject)


>From: bsashmead@...
>
>Hi everyone
>   Courtney is doing better with her RSV.  That cough is awful sounding.
> Where  can you get the "emia" numbing cream?  I heard that there was a
cream out there, but I never knew the name etc...
> Erin's vein's like to hide and roll also.  It makes it difficult on both
her and the lab tech.  In fact, every time we get the blood drawn, we always
get the same lab worker.  Poor  worker.  She always has a hard time.  Now
she is down to giving it one try before going to get another co-worker to
try and draw the blood.
> Ok, about this bone age thing.  We have not had the experince yet.  We
were told that when Erin is 5 she will have it done (2 1/2 more yrs)  So why
worry now?  Because it is only recently that I have heard people tell me
that how well I do her meds plays out her bone age.  Yes, this has distrubed
me. So if her bone age is advanced, does that mean it's my fault because I
didn't do her meds good enough?
> Erin's first dr told us to do meds right on the nose, 8 am, 4 pm, and 11
pm.  But her new one said to do it in the morning, afternoon and night.  How
strict are you guys when it comes to med time?
> I don't know about you guys, but I still have days when I have a hard time
dealing with the reality that my daughter has CAH - not that I don't love
her.  I guess I still feel a little guilty.  Today is just one of those
days. Sorry!!
>  Ok I'm not going to leave on a damp note.  Here is something to think
about
>1- pound for pound, hamburgers cost more than new cars
>2 - five jello flavors that flopped - celery, coffee, cola, apple, choc.
(yuck)
>3- The Eisenhower interstate system requires that one mile in every 5 must
be straight.  These straight sections are usalbe as airstrips in times of
war or other emergencies.
>
>Thanks for "listening"
>Tami
>
>------------------------------------------------------------------------
>Ta Da! Come see our new web site!
>http://www.onelist.com
>Onelist: A free email community service

Tami-
We got our first bone age at one year of age and do so every year at the
same time of year.  It is my understanding from most of the people I have
"met" online that they do the same.  I think waiting until she is 5 would
not let you know along the way how she is growing.  There are so many things
they have to balance...17 hydroxy, renin levels, and growth.  All that has
to me taken into account regularly.  I would ask why he wants to wait until
5 yrs of age.
-Debbi
-----Original Message-----
From: bsashmead@... <bsashmead@...>
To: CAHsupport@onelist.com <CAHsupport@onelist.com>
Date: Wednesday, March 03, 1999 7:10 PM
Subject: [CAHsupport] (no subject)


>From: bsashmead@...
>
>Hi everyone
>   Courtney is doing better with her RSV.  That cough is awful sounding.
> Where  can you get the "emia" numbing cream?  I heard that there was a
cream out there, but I never knew the name etc...
> Erin's vein's like to hide and roll also.  It makes it difficult on both
her and the lab tech.  In fact, every time we get the blood drawn, we always
get the same lab worker.  Poor  worker.  She always has a hard time.  Now
she is down to giving it one try before going to get another co-worker to
try and draw the blood.
> Ok, about this bone age thing.  We have not had the experince yet.  We
were told that when Erin is 5 she will have it done (2 1/2 more yrs)  So why
worry now?  Because it is only recently that I have heard people tell me
that how well I do her meds plays out her bone age.  Yes, this has distrubed
me. So if her bone age is advanced, does that mean it's my fault because I
didn't do her meds good enough?
> Erin's first dr told us to do meds right on the nose, 8 am, 4 pm, and 11
pm.  But her new one said to do it in the morning, afternoon and night.  How
strict are you guys when it comes to med time?
> I don't know about you guys, but I still have days when I have a hard time
dealing with the reality that my daughter has CAH - not that I don't love
her.  I guess I still feel a little guilty.  Today is just one of those
days. Sorry!!
>  Ok I'm not going to leave on a damp note.  Here is something to think
about
>1- pound for pound, hamburgers cost more than new cars
>2 - five jello flavors that flopped - celery, coffee, cola, apple, choc.
(yuck)
>3- The Eisenhower interstate system requires that one mile in every 5 must
be straight.  These straight sections are usalbe as airstrips in times of
war or other emergencies.
>
>Thanks for "listening"
>Tami
>
>------------------------------------------------------------------------
>Ta Da! Come see our new web site!
>http://www.onelist.com
>Onelist: A free email community service

Hi everyone
   	 Courtney is doing better with her RSV.  That cough is awful sounding.
	  Where  can you get the "emia" numbing cream?  I heard that there was a cream
out there, but I never knew the name etc...
 	 Erin's vein's like to hide and roll also.  It makes it difficult on both her
and the lab tech.  In fact, every time we get the blood drawn, we always get the
same lab worker.  Poor  worker.  She always has a hard time.  Now she is down to
giving it one try before going to get another co-worker to try and draw the
blood.
	  Ok, about this bone age thing.  We have not had the experince yet.  We were
told that when Erin is 5 she will have it done (2 1/2 more yrs)  So why worry
now?  Because it is only recently that I have heard people tell me that how well
I do her meds plays out her bone age.  Yes, this has distrubed me. So if her
bone age is advanced, does that mean it's my fault because I didn't do her meds
good enough?
	  Erin's first dr told us to do meds right on the nose, 8 am, 4 pm, and 11 pm. 
But her new one said to do it in the morning, afternoon and night.  How strict
are you guys when it comes to med time?
	 I don't know about you guys, but I still have days when I have a hard time
dealing with the reality that my daughter has CAH - not that I don't love her. 
I guess I still feel a little guilty.  Today is just one of those days. Sorry!!
   Ok I'm not going to leave on a damp note.  Here is something to think about
1- pound for pound, hamburgers cost more than new cars
2 - five jello flavors that flopped - celery, coffee, cola, apple, choc. (yuck)
3- The Eisenhower interstate system requires that one mile in every 5 must be
straight.  These straight sections are usalbe as airstrips in times of war or
other emergencies.

Thanks for "listening"
Tami

We use the "Emla" numbing cream for our blood draws.  It has made life wonderful
for the tests!  Although we are still a bit aprehensive at times, the techs can
probe a bit and it  not be quite as painful.  Kyle is a tough guy to find a good
vein and they like to run and hide .  ANyone else ben told that?
-Debbi
     -----Original Message-----
     From: Angela Strong <jaade1@...>
     To: CAHsupport <CAHsupport@onelist.com>
     Date: Tuesday, March 02, 1999 8:41 AM
     Subject: [CAHsupport] (no subject)


     Hi Ladies!
          Yes, we've done the bone age.  After the first few years, it doesn't
happen all that often, and it's just an X-ray.  The techs at Primary are really
cool with the girls.  They always ask them to wait and then they let them see
their hands.  It just tests to see if their growth matches their actual age. 
The girls have always been right on target until this last time and they are
about a year and a half off.  What happens with these kids (from my limited
understanding) is they tend to go through puberty a little early if their meds
are off.  This causes them to grow too quickly before it's time.  So although my
girls are tall for their age now, they've had their "big growth spurt" for
puberty and won't gain much height from now on.  The doctors have told us that
5'2" is about it for them even though their dad is 6'1".  (Of course, I'm only
5'4"1/2.  My son however will be about 6'2".)
          About drawing blood, yeah to be blunt, it sucks!  When they were small
it was once every 3 months, then 4 months, and now 6 months.  So if it's been a
year, consider yourself lucky, which I think you do.  When they were tiny, they
screamed like banshees, but they really couldn't fight it.  Then they got big
enough that there was no cooperation and we had to put them in the papoose.  The
techs have always been really good to us knowing that this was something we
couldn't scare them with and they needed to be extra careful.  (The only nice
thing I have to say about military care, by the way!  LOL!)  Then we finally got
to the stage where curiosity got the best of them.  They wanted to see the blood
run into the little tube.  But know they know it all!  I think it ticks the
techs off a little when they tell him/her what to do.  I'm hoping this is a
temporary stage as well!
          At the risk of running on, I do have a funny story about this.  Once we
were drawing their blood, and Elizabeth was sitting on my lap.  I was holding
her one arm straight and still and the other one tucked into her body.  (Not
only is their last name Strong, but they REALLY are strong.)  The tech stood
directly in front of her and I asked him if he wanted me to hold her legs.  He
said no, and much to his surprise, when the needle went in her leg went flying! 
He NEVER said a word but a single tear welled up in his eye as he smiled and
went on with the job.  I could hardly control myself!  Needless to say, he never
stood in front of her again.
          Well today is Dr. Seuss' birthday and my son's first grade class is
expecting me to read to them today, so I'd better get ready for school.  You
ladies have a wonderful day!

     Angi

Hi Ladies!
      Yes, we've done the bone age.  After the first few years, it doesn't happen
all that often, and it's just an X-ray.  The techs at Primary are really cool
with the girls.  They always ask them to wait and then they let them see their
hands.  It just tests to see if their growth matches their actual age.  The
girls have always been right on target until this last time and they are about a
year and a half off.  What happens with these kids (from my limited
understanding) is they tend to go through puberty a little early if their meds
are off.  This causes them to grow too quickly before it's time.  So although my
girls are tall for their age now, they've had their "big growth spurt" for
puberty and won't gain much height from now on.  The doctors have told us that
5'2" is about it for them even though their dad is 6'1".  (Of course, I'm only
5'4"1/2.  My son however will be about 6'2".)
      About drawing blood, yeah to be blunt, it sucks!  When they were small it
was once every 3 months, then 4 months, and now 6 months.  So if it's been a
year, consider yourself lucky, which I think you do.  When they were tiny, they
screamed like banshees, but they really couldn't fight it.  Then they got big
enough that there was no cooperation and we had to put them in the papoose.  The
techs have always been really good to us knowing that this was something we
couldn't scare them with and they needed to be extra careful.  (The only nice
thing I have to say about military care, by the way!  LOL!)  Then we finally got
to the stage where curiosity got the best of them.  They wanted to see the blood
run into the little tube.  But know they know it all!  I think it ticks the
techs off a little when they tell him/her what to do.  I'm hoping this is a
temporary stage as well!
      At the risk of running on, I do have a funny story about this.  Once we
were drawing their blood, and Elizabeth was sitting on my lap.  I was holding
her one arm straight and still and the other one tucked into her body.  (Not
only is their last name Strong, but they REALLY are strong.)  The tech stood
directly in front of her and I asked him if he wanted me to hold her legs.  He
said no, and much to his surprise, when the needle went in her leg went flying! 
He NEVER said a word but a single tear welled up in his eye as he smiled and
went on with the job.  I could hardly control myself!  Needless to say, he never
stood in front of her again.
      Well today is Dr. Seuss' birthday and my son's first grade class is
expecting me to read to them today, so I'd better get ready for school.  You
ladies have a wonderful day!

Angi

Hi Tami-

Are you talking about getting a bone age?  Each year my son gets an x-ray of
his wrist and some "unknown person" reads it and tells us what age range his
bone is in.

My Kyle got RSV when he was 3 months old.  We were admitted to the hospital,
but I think it was only cautionary.  They kept taking blood to see how he
was doing and we went home the next day.  Isn't that cough just awful!!!
-Debbi
-----Original Message-----
From: bsashmead@... <bsashmead@...>
To: CAHsupport@onelist.com <CAHsupport@onelist.com>
Date: Monday, March 01, 1999 10:34 PM
Subject: [CAHsupport] (no subject)


>From: bsashmead@...
>
>Hello everyone,
>   For some reason my computer keeps kicking me out of the onelist
community, so if I don't complete a sentence, you will know why.
>    I like LOL,  what a great saying!!  I will have to use that ofter.
>    Erin is now over her illness, she was kind enough to share it with my 2
mnth old.  However, my 2 mnth old's developed into RSV.  Needless to say,
I'm having too much fun. JK.  Actually, we are pretty lucky she is not bad
enough to be hospitalized.
>     O K  question time.  Have you guys done bone density on your  children
with CAH (I think that is what it is called- where you see how mature their
bones are in comparison with their actual growth.,)  I have just heard
stories about it and wondered what it was like from a non doctor point of
view.
>    Erin has endo clinic at the end of this mnth.  Hopefully we won't have
to draw blood.  We haven't had to draw blood for about a yr.  YEAAAAA!!!
She cries more when they try to find the vein then when they actually poke
her.
>
>Any ways hope all is well.
>
> Debbit- I'm glad that you joined the list.
>
>  Hope to talk to you soon.
>
>Tami
>
>------------------------------------------------------------------------
>We are proud as punch of our new web site!
>http://www.onelist.com
>Onelist: The leading provider of free email community services

Hi

Hello everyone,
    For some reason my computer keeps kicking me out of the onelist community, so
if I don't complete a sentence, you will know why.
     I like LOL,  what a great saying!!  I will have to use that ofter.
     Erin is now over her illness, she was kind enough to share it with my 2 mnth
old.  However, my 2 mnth old's developed into RSV.  Needless to say, I'm having
too much fun. JK.  Actually, we are pretty lucky she is not bad enough to be
hospitalized.
      O K  question time.  Have you guys done bone density on your  children with
CAH (I think that is what it is called- where you see how mature their bones are
in comparison with their actual growth.,)  I have just heard stories about it
and wondered what it was like from a non doctor point of view.
     Erin has endo clinic at the end of this mnth.  Hopefully we won't have to
draw blood.  We haven't had to draw blood for about a yr.  YEAAAAA!!!  She cries
more when they try to find the vein then when they actually poke her.

Any ways hope all is well.

  Debbit- I'm glad that you joined the list.

   Hope to talk to you soon.

Tami

Sorry I forgot to mention that!  I am in Huntsville, AL.  We also take the
cortef and florinef.  We stopped supplementing the sodium when he was a year
old.  He gets enough from table foods, I guess.  I have often wondered how quick
one could sweat or get dehydrated from summer activites, too.  When we have
visited family at the coast, I wondered if he would be okay.  As it happens, my
non-cah daughter gets all redfaced when outside playing and he can go and go and
go.  OF course, she is my fair-skinned beauty and Kyle gets the ideal tan (I
hate that! hehehe).  We have had very few fevers so far.  None more than normal.
He went through a phase where he would get a fever about 5 in the
afternoon..high enough for stress dose, and it would break with that and
tylenol...then by bedtime (I would sleep with him to be safe) it would be gone
and never return...and no cold or anything would follow.

I am so glad you started this list.  I have been keeping up with scrapbooking
through one like this and I find it much easier than my message board at times!

Talk soon!
-Debbi
     -----Original Message-----
     From: Angela Strong <jaade1@...>
     To: CAHsupport <CAHsupport@onelist.com>
     Date: Friday, February 26, 1999 2:03 PM
     Subject: [CAHsupport] (no subject)


     Hi Debbi!
          Glad to have you here!  You didn't mention where you were from.  As a
matter of fact, I don't think I did either in my introduction letter.  We are on
Hill Air Force Base in Utah (near Salt Lake).  I know what you mean about the ER
not knowing, in fact, Tammi and I both know what that's like.  In fact, being a
military dependent (dh is in the Marine Corps), EVERY trip to the hospital is a
teaching experience.  I've gotten so good at explaining it, that sometimes I
feel like I should be the doctor.  LOL!!
          I'm curious, since I have girls, what type of meds does your son take? 
We have always been on cortef, florinef, and saline.  We have never had broken
bones, but we've had several scary fevers, and all at the most inopportune times
I might add!  Of course, realistically, there never is a good time for that.  I
think each of my twins have been hospitalized 3 times for fevers.
          What I've always worried about, and not because anyone has told me to,
was that they would go outside and sweat too much.  Silly!  I know!  They are 10
and it's never happened, but... .  The things we get all worked up over! 
(sarcasm)
          Anyway, I just wanted to say "Hi!" and "Glad to meet you!"

     Dear Tammi,
          LOL means laughing out loud.  There are some variations like ROFL and
ROFLMAO (rolling on the floor laughing and rolling on the floor laughing my a**
off).  I try not to use the former but sometimes I just crack myself up.  Just
kidding!
     Gotta run.  My son has 2 birthday parties this weekend, not including his
own sisters!  If I didn't volunteer in his class and show up at every single
other party, we'd be saying forget about it this weekend, but I don't want to
risk any hurt feelings.  I never thought volunteering would cost so much!!  LOL!

Hi Debbi!
      Glad to have you here!  You didn't mention where you were from.  As a
matter of fact, I don't think I did either in my introduction letter.  We are on
Hill Air Force Base in Utah (near Salt Lake).  I know what you mean about the ER
not knowing, in fact, Tammi and I both know what that's like.  In fact, being a
military dependent (dh is in the Marine Corps), EVERY trip to the hospital is a
teaching experience.  I've gotten so good at explaining it, that sometimes I
feel like I should be the doctor.  LOL!!
      I'm curious, since I have girls, what type of meds does your son take?  We
have always been on cortef, florinef, and saline.  We have never had broken
bones, but we've had several scary fevers, and all at the most inopportune times
I might add!  Of course, realistically, there never is a good time for that.  I
think each of my twins have been hospitalized 3 times for fevers.
      What I've always worried about, and not because anyone has told me to, was
that they would go outside and sweat too much.  Silly!  I know!  They are 10 and
it's never happened, but... .  The things we get all worked up over!  (sarcasm)
      Anyway, I just wanted to say "Hi!" and "Glad to meet you!"

Dear Tammi,
      LOL means laughing out loud.  There are some variations like ROFL and
ROFLMAO (rolling on the floor laughing and rolling on the floor laughing my a**
off).  I try not to use the former but sometimes I just crack myself up.  Just
kidding!
Gotta run.  My son has 2 birthday parties this weekend, not including his own
sisters!  If I didn't volunteer in his class and show up at every single other
party, we'd be saying forget about it this weekend, but I don't want to risk any
hurt feelings.  I never thought volunteering would cost so much!!  LOL!

Hello-

I look forward to chatting in this format.  I have a CAH website and was
considering adding another message system like this and...low and behold!!
There already was one!  How great!  I get the benefits without the work!
Hahaha!
I am hoping to meet some new people and perhaps see some old friends who I
have lost touch with along the way.

I have a 3 yr old son with salt-wasting CAH.  He has an older sister who
does not have CAH.  I feel lucky that we have made it through some things
without problems.  I greatly feared what would happen with broken
bones....and we did fine!  Although, I learned yet another ER does not know
what to do with CAH.  {{{{sigh}}}}

I look forward to "e-mailing" soon!
-Debbi Watson
-----Original Message-----
From: CAHsupport-owner@onelist.com <CAHsupport-owner@onelist.com>
To: jrwatson@... <jrwatson@...>
Date: Friday, February 26, 1999 7:49 AM
Subject: [CAHsupport] Welcome to CAHsupport@onelist.com


>Hello,
>
>Welcome to the list. Please take a moment to review this message.
>
>First I'd like to introduce my family.  My husband John and I have been
married
>since 1988.  Our twin girls came 9 months later (although they were 2
months
>premature) and were diagnosed with CAH one day later.  A newborn screening
test
>was being tested and the doctor actually thanked me for making her numbers
look
>so good!  What do you say, "You're welcome?" I guess.  (They have the
>salt-wasting variety.)  Anyway, since then we have had one son with no
health
>difficulties (except behavioral...LOL!).
>
>I'm so glad to have you join our list.  It is relatively new, so there may
not
>be many subscribers at first but I hope the word will spread.  Take a
moment to
>introduce yourself and then join on in the conversation!
>
>One note, please do not send any advertisements through this list without
prior
>permission from the list owner, however, links to valuable information are
>welcomed.
>
>To unsubscribe from this list, go to the ONElist web site, at
>www.onelist.com, and select the User Center link from the menu bar
>on the left. This menu will also let you change your subscription
>between digest and normal mode.
>
>
>Thanks,
>Angi at jaade1@...
>The List Owner
>

Hi Debbi,
      Welcome to our list.  There are only a few members so far, as this list is
new, but we hope others will find out about it and join us.  Tell us about
yourself and your family, where you are,  and who has CAH.
      Thanks,


       Angi (the list owner)

Hi Tami,
      I guess you're saying you've been a little sleep deprived lately!?  That's
understandable.  Although the girls had to have their meds 5 times a day at
equal intervals (meaning 2 were in the middle of the night), they were awake to
be fed anyway, so what the heck!  John and I figured out if I did the first and
he did the second (I nursed and he bottled) that we both got some uninterrupted
sleep.  Dillon on the other hand NEVER slept.  Or at least so I'm told, by the
dad who didn't either!  LOL!  Anyway, so I get the general impression of what
you're going through.
      Counseling?!  Well that too must differ from place to place.  I was told
(because I asked) that as long as we treat it as a fact of life, so will they. 
Of course this is serious, but that's not something Erin needs to know for a
while.  My girls are 10 and are just now starting to ask what it's called!  They
had no idea that anything was wrong until recently.  As far as Erin's surgery,
since she's so young, I'll be surprised if she even remembers it a couple of
years from now.  Now I already know that the girls will be able to have
children, barring some unforeseen future problem.  They have all the moving
parts, and now a brand new vag***!  I know this is personal but I'm curious,
does she have to dilate daily?  (This is something they do to keep the labia
separated.  Twice a day now, and once daily when they are older.  I joke with
close family that their husbands will really love me!  The first talk I will
have with my son-in-laws is "Now make sure you have sex every single day!" 
Yeah, I'll be popular with them!  LOL!)
      I think so far my favorite part (lots of sarcasm here!) has been explaining
and explaining, especially to medical staff.  Although it occassionally makes me
feel like I could've gone to medical school and done pretty well!
      The salt part is great!  Whenever I need french fries I just tell my
husband that the girls look a little pale.  Although, after ten years, I think
he's caught on to me!
      Today I spoke with a doctor at Hill and he mentioned there was someone
else.  I told him to give them my number so if they needed to talk, they had a
contact.  I will give them this site, as well.  Well here I go rattling on
again.  I will "talk" to you later.  Get some sleep!!!

                                             Angi

Hi Angi,
      Sorry it has taken me so long to get back to you.  My new born thinks that
night is day and vice versa while my 2 yr old has found the slogan, early to
bed, early to rise.  Oh well.

      Erin did have the virilizing effects of the CAH.  She had her surgery when
she was 10 mnths.  I think she had both operations at the same time because the
dr said that he wouldn't need to see her until she hit puberty to make sure that
all was well.   She had her surgery at PCMC.  It was an emotional day for all of
us.  She didn't understand what was going on and when we got to the hospital,
the surgery before us ran into complications so she  got into surgery 2 1/2  hrs
late.  The poor kid was starving to death.  But at least it is over.
          Erin is on Flournif, Cortef, and  Sodium Chloride.  Erin loves salt,
now.  She use  to throw fits when we gave it to her, but she loves it now.  We
don't really have a hard time giving her meds.  She will even remind us every
once in a while (usually before bed) I wish she would remind us in the
afternoon.  That is the hardest time for me to remember.  (She takes her meds in
the morning, afternoon, and night.)
.        The only hospitalization that Erin has had is when she was a newborn
and when she was 12 days old and crashed.  She has had the flu twice and that
was touch and go.  Dr S,. (Swinyard) checked in with us every 24 hours to see
how she was doing and told us what to look for and if she stared to show certain
signs we were to take her to PCMC.  The fist time she got the flu, we had to
give her the shot.  That was hard and she was very surprised that we were the
ones giving it to her.
       I do worry about her future.  I worry about how she is going to react to
her condition the older she gets,  if she will be able to have children etc... 
But those are things in the future and I'll just have to deal with them when
they arise, I guess.  The one thing that bothered me when she was hospitalized
the second time is that there were hints that for her to lead a normal life, she
would need to be in counseling.  I don't agree with that. Did anyone ever say
that to you about the twins?
       In the last letter, you said that their Birthday is this mnth.  Wish them
Happy B-day from me.

Write soon,
            Tami

-----Original Message-----
From: Patowens22@... <Patowens22@...>
To: ECE_Sharing_Loop@onelist.com <ECE_Sharing_Loop@onelist.com>;
RPerrea856@... <RPerrea856@...>; daymoms@onelist.com
<daymoms@onelist.com>; PTA@onelist.com <PTA@onelist.com>
Date: Sunday, February 07, 1999 8:35 AM
Subject: [PTA] Chicken Soup for the Soul


>From: Patowens22@...
>
>         _____________________________________________
>         |                                            |
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> \       |   is a free inspirational e-mail service   |       /
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>   /     |  selling CHICKEN SOUP FOR THE SOUL series. |     \
>  /      |____________________________________________|      \
> /________\                                          /________\
>
>
>
>         Today's Helping of Chicken Soup for the Soul...
>
>Chicken Soup for the Soul: Home Delivery is sponsored by:
>
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>
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>
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>  - Don't assume that your assets will be distributed to your loved ones
>   when you die.
>
>=================================================================
>
>  Bonehead
>
>  As long as I live, I won't forget when I met Alvin C. Hass for the first
>  time in 1991. The other inmate in the prison class didn't use the name
>  "Alvin Hass" when he introduced us - not even close! He introduced Alvin
> as
>  "Bonehead." Immediately, I felt uncomfortable with Alvin's nickname. The
>  tall, soft-spoken inmate wouldn't look at me as he shook my hand.
> Needless
>  to say, "Bonehead" was bald-headed. The hair that he had on the sides
> went
>  way down past his shoulders. I felt as though I were staring at him and
>  tried not to look. But there was a large (and very intimidating) tattoo
> on
>  top of his bald head. (Yes! A tattoo on his head!) The tattoo was of
>  Harley-Davidson wings and covered the entire top of his head.
>
>  As a teacher, I try to maintain excellent composure during stressful
> times,
>  and I made it through that first day of class. At the end of the period,
>  "Bonehead" slipped me a note while he was filing out of the classroom. I
>  thought, "Oh no! He's telling me that I'm going to be 'taken out' by his
>  other "Harley" buddies if I don't give him a good grade or something like
>  that." A little later, I had a chance to read the note. It said, "Teach
> (he
>  always called me "Teach"), breakfast is an important meal and if you're
> not
>  in by then you're in big trouble! - Bonehead, the Mountain Hippie."
>
>  Bonehead completed a series of six classes with me over many months. He
> was
>  an excellent student who seldom spoke. However, he handed me a note
> nearly
>  every day with some type of saying, tidbit, anecdote or other wise advice
>  for life. I looked forward to receiving them and became a little
>  disappointed if by chance he didn't give me one. I still have them all
>  today.
>
>  Bonehead and I clicked. Somehow, I knew that each time I opened my mouth
> to
>  teach, he understood me. He silently soaked up everything I said. We were
>  connected.
>
>  At the conclusion of the course, each student received a certificate.
>  Bonehead had completed the course doing excellent work the entire way
>  through and I was excited to give him his certificate.
>
>  We were alone when I presented his certificate of completion. I shook his
>  hand and briefly told him what a pleasure it was to have had him in my
>  classes and that I appreciated his hard work, excellent attendance and
>  superior attitude. His response stayed with me and continues to make a
> deep
>  impression on my life. In that soft voice of his, Bonehead said, "Thank
>  you, Larry, You're the first teacher in my life that ever told me I did
>  anything right."
>
>  As I walked away, I was awash with emotion. I could hardly hold back the
>  tears thinking that in all of Bonehead's growing-up years, no one ever
> told
>  him he had done anything right.
>
>  Now, I'm from the "old school." I was raised in a conservative setting
> and
>  I believe criminals must pay for their wrongdoings and be held
> accountable.
>  Yet I've asked myself several times, "Could it be, by chance, just by
>  chance, that Bonehead's never hearing 'You did that right’ or 'Good job'
>  might have had anything at all to do with why he ended up in prison?"
>
>  That moment's experience implanted into my heart the desire to make sure
> I
>  acknowledge, in a positive way, every student that does something
> "right."
>
>  Thanks, Bonehead, for telling me that I, too, did something right.
>
>        By Larry Terherst
> from A 3rd Serving of Chicken Soup for the Soul
>      Copyright 1996 by Jack Canfield and Mark Victor Hansen
> =================================================================
>  If you enjoy Chicken Soup for the Soul: Home Delivery, please
>  register your colleagues and friends using the link below!
>
>               http://SoupServer.com/friend.html
> ===============================================================
>
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>

-----Original Message-----
From: Patowens22@... <Patowens22@...>
To: KNOTHEAD73@... <KNOTHEAD73@...>; LronMom@...
<LronMom@...>; ECE_Sharing_Loop@onelist.com
<ECE_Sharing_Loop@onelist.com>; daymoms@onelist.com <daymoms@onelist.com>;
RPerrea856@... <RPerrea856@...>; PTA@onelist.com <PTA@onelist.com>
Date: Sunday, February 07, 1999 8:48 AM
Subject: [PTA] TIME FOR PEOPLE


>From: Patowens22@...
>
><< HAVING TIME FOR PEOPLE
> >>     ~~~~~~~~~~~~~~~~~~~~~~
> >>
> >>        A pastor making the rounds of his rural parish stopped by a
> >>     farmhouse in the neighborhood.  He was impressed by the
intelligence
> >>     and excellent behavior of the only child in the home, a
four-year-old
> >>     boy.
> >>        Then he discovered one reason for the child's charm.  The mother
> >>     was at the kitchen sink, washing the intricate parts of a cream
> >>     separator, when the little fellow came to her with a magazine.
> >>     "Mommy," he asked, "what is the man in the picture doing?"
> >>        To the pastor's surprise, she dried her hands, sat down in a
> chair,
> >>     took the boy in her lap, and spent ten minutes answering his
> >>     questions.
> >>        After the child had left, the pastor commented on her having
> >>     interrupted her chores to answer the boy's questions and told her,
> >>     "Most mothers wouldn't have bothered."
> >>        "I expect to be washing cream separators for the rest of my
life,"
> >>     the farm lady told the pastor, "but never again will my son ask me
> >>     that question."
> >>
> >>     -  Harold Stoddard
> >
>
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>to digest, go to the ONElist web site, at http://www.onelist.com and
>select the User Center link from the menu bar on the left.
>

Hi Tami!
      Don't sweat the little stuff, I say! (The e-mail thing!)  I'm so glad you
got here.  I think if we only get a few others to join us, it will be great!
      I can't believe they wouldn't do the CVS testing for you!  That little test
(big needle, LOL!) could save them so much money in the long run.  Of course you
know, but if the baby tested positive and female, you could have taken the meds
to prevent surgeries on down the road!  Does Erin have the virilizing effects of
the CAH?  Have you undergone the first surgery yet?  Or what have they told you
about that?  My girls had their clitorplasty at 13 mos. in Dallas' Children's
Hospital.  Then they had the vaginoplasty at 8 years here at Primary Children's
Hospital.  Dr. Rebecca Myers did that surgery and I would definitely recommend
her!  She and her staff were excellent to us!
      As for the girls handling it well,... .  I have a couple theories.  The
twin thing may have helped.  The only other girl they knew for a long time also
took meds all the time.  But I think the biggest thing was that we have always
acted around them like everything was normal.  (Oh yeah, I get stressed!  But I
always try to make sure they aren't in the room when I'm discussing it, or
venting!)  Only recently have they really figured it out, (about 7 years old
when we started preparing them for the surgery and having to explain the facts
of life), and even then I made sure to let them know that, yes surgery is a big
deal, but we would handle it and they would be just fine.  Amanda has recently
started to not want her meds (what are you guys on?) and only then have I told
her "Okay, skip them.  But don't come crying to me when you are sick and end up
in the hospital!"  Usually that gets her to take them.  They've been admitted
several times for the flu or dehydration and fever, stupid things!  But they
hated it so it's still a good threat!  At 2 1/2, Erin really shouldn't even be
aware of what all the fuss is about.  And as long as you handle it well in front
of her, she will be fine!
      Oh well, I know I go on.  Congrats on the new baby, by the way!  You won't
believe how easy she is without all the meds to remember!
                                                                  Angi

Hi Angie,
   Sorry about that first message.  I just know a little about e-mail stuff. 
Anyways,  here is a some back ground  Brett and I have been married for five
years .  Erin was born  three years after we were married (she is now 2 1/2). 
She was diagnosied w/CAH - Salt wasting  at birth.  Her story is printed in the
group newsletter.  Courtney was born this Dec 1999.  She does not have CAH.  We
wanted to do prenatal testing w/Courtney, but our insurance would not cover it. 
The genetic counselor we were working w/wanted to send us all over the US for
tests.  There was no way we could afford it, so we didn't do it.  Needless to
say it was a rough pregnancy, emotionally.
    My huisband and I were both surprised to find out we were carriers.  Do you
think that because both of your girls have CAH, that they can cope with it
better because they know someone else with it?
     I can't rember all the questions you asked me.  I still tring to figure this
program out.  Anyways, thanks for the invite.  Hope to hear from you soon!
Tami

Hi Tammie!
      I'm sorry it took me so long to get this approved.  (It's really just
clicking a button!)  But my sister-in-law is in town visiting and this is the
first I got to my e-mail.  (Normally, I'm quite addicted!)  Anyway, welcome to
the list!
      Tell me about your family!  How many children do you have?  How many are
affected with CAH?  (Of course here I'm assuming it's your child and not you. 
Let me know if I'm wrong.)  When was the diagnosis made?  How have you been
coping?  What's been the most difficult part for you?  Yes, I'm full of
questions, but like many of the others, I have never really met anyone else
dealing with CAH.
      Anyway for the record,  I have 3 kids.  Elizabeth and Amanda are 9 year old
twin girls affected with CAH, salt wasting variety.  (Of course they'll be 10
this month, hard to believe!)  Dillon is my 7 year old precocious singleton son.
(Unaffected by CAH, but we went through the CVS testing for him.)  My husband
and I have been married 11 years this May and dealing with this since the girls
came along.  Now it's old hat, but at first it was very overwhelming!  Of
course, they were preemies and stayed in the hospital for 30 days, partly to
gain weight and partly to get their meds at a correct level.  Then they came
home and we did meds for two 5 times a day at first and now we're down to 3,
praying for 2.  I think the most difficult part so far has been the actual
surgery in 1997 to correct the virilization.  Mostly emotionally difficult
because we had no idea what to expect.  Now they do their daily dilation and
it's really no big deal.  (Let me know if you are to this point, and I'll fill
you in on that if you want.)
      Anyway, I'm sure we'll chat back and forth about this kind of stuff.  I
just wanted to say "Hi" and welcome you.  I really hope this becomes a forum for
parents and family members to get away from that "Are we the only ones?"
feeling!  I know I've been there, done that!  Not going to do that again!!
      Chat with you later.                                          Angi