MHE

You go little Mikey! I can't wait to meet him Nikki! Sounds like such a
little sweetie!
When his b-day, Nikki?
Amy

Hey guys,
Thanks for putting up with my mail woes... I don't really know why my posts are
showing up so late... the 4 that just came through, I posted at about 5:00 this
morning. who knows.
Well.. off to Children's with Ben in the snow for an appointment with the
urologist. Maybe he can give us some answers to some of the kidney questions I
have. I have waited 3 months for this appointment and wouldn't it figure that we
have a 90min. delay for school this morning.. the kids don't have to be there
until 10:30.. and Ben's appointment is at 10:15 45 minutes away! Figures...
thank God for neighbors!
Anyway.. must run.
Vicki

Is anyone else getting mail?
Please e-mail me privately if you get this.. I am not getting onelist mail for
some reason.
Vicki

Vicki, Your mail is coming thru here.. So you are on the onelist right...
check out
all preferences with your email address , OK? It could be you got something
listed
and checked wrong.. I hope you find the problem. but Your mail is here . Tina

Sybil..
I understand completely what you are saying. We do definitely have to pick our
battles and if you can make something work for Rose so that she isn't left out
and there is no animosity toward either you or her, than that is the right thing
to do. It is just so hard because our kids look so "normal" I sometimes think
the is David was overweight that his teachers would believe me more. But
because I bust my ass to make sure that his diet is maintained and that his
weight stays down, they look at him and think that there isn't a problem.. that
I am exaggerating the weight thing.. instead of looking at him and thinking "wow
this mom is really working hard" which is what I think when I see kids like
David and Rose. it is so hard.
David's preschool teacher is very nice and very creative but to put it kindly
she is about as wide as she is tall and I feel like everytime I say something
about David's diet or weight that she takes it as a personal insult.
You are a good Mom and you are doing the very best thing you can for Rose, you
are allowing her to be a child and fit in with her friends but at the same time
you are still in control of the food issue by cutting the amount that she has.
Hang in there!
Vicki

I am still not getting my own mail! I sent 3 messages out this morning but got
nothing back. I did see my messages lastnight though. Please let me know how
this one comes through/ thanks.

YAY BRIDGET! Mikey's been eating cereal, fruit, and veggies - especially
carrots!! Those are his Faves! Our doc didn't give any special instructions
just whatever he seems ready for. Luckily he seems to like veggies more!
~Nikki

Hi Jane,
Its funny you mention this. Robbie was obsessed with soft toys. His
grandma got him a soft toy for christmas that was a little guy. We called it
Robbies Floppy guy, cause he is floppy. He still loves that little guy and
many other soft toys too.
Renee-Mom to Ryan 8, Beckah 5, Robbie PWS 3 1/2 and little Raelynn 3 months.

Wow, that is realing stacking up. We aren't getting as much as they
thought, looks like its going out to sea. Pray this white stuff stops by
Monday or I will need Buzz Light Year.
Cathy

Greetings!
Thank you to everyone that either read my long post and/or responded to it! I
think it is important to share these events because it prepares us for the
future and strengthens our resolve to best serve the needs of our children. I
have come to the conclusion whether or not you agree with this, that I am
letting go of this issue for the time being. Some of the other parents in that
school are obviously very self-absorbed and probably always will be. I do not
have the time or energy to try and enlighten them or change them. I do though,
have to be diplomatic and still interact with these people...I don't really care
what they think of me but I don't want hostility which could arise...as I said I
am not going to change these people. If I am approached and the subject comes up
again, that is when I will whip out the Shelly or Scotty brochure (thanks Maria
for sending them)!
When I think of Rose, I think of a whole person. Yes, the food and calories are
a major concern, but she is a very intelligent, thoughtful and sensitive person.
To deny her something in front of other children and have her go into a rage is
similar to putting her on a cart and wheeling her around (as with Nathan <?
This would draw such negative attention to her and I am very angry and
disappointed that the teacher didn't think about this aspect. I could not let
Rose be humiliated like that ...nor Julia. They are in lunch together and kids
talk. Julia has already said that sometimes Rose embarasses her. Why put both of
them through that? My compromise was that Rose could have pizza today but I had
the teacher cut off one third of the slice before giving it to Rose. I also
allowed Rose to have one chocolate chip cookie. Rose also had a cup of Juicy
Juice which the school has taught her to water down....that is a good thing. At
home, I water down juice for both Julia and Rose....there is no nutritional
value in juice and it is very high in calories. I will only be participating in
four more pizza days; one in Feb, one in March,one in April and one in May.
However, I will be writing a very detailed letter to the teacher when she asks
for suggestions for next year, if Rose will be there next year. I know that this
whole issue could have been a real positive thing for everyone...learning about
good nutrition, helping the less fortunate, etc. and I will try to express those
aspects of positive learning to the teacher but I don't think there will be much
change this year. Based on my recent conversations, pizza day is a done deal.
Unfortunately, in situations like this, what is supposed to be a privilege or
luxury turns into a necessity or entitlement. There was a high school football
team somewhere in PA or NJ and one of the team members had cancer and was going
through chemotherapy. Out of respect and compassion, everyone on the team shaved
their heads in honor of their teammate. This type of lesson could very easily be
taught to pre-schoolers. You had better believe that this will be mentioned in
my letter to the teacher.
Again, thanks for listening and expressing your opinions....I value them
greatly.
Sybil

Just heard the news and they said America and the United Kingdom are being hit
by a sever flu epidemic and the poms are blaming all the Australian tourists for
bringing it over - cheeky buggers, we don't have a flu epidemic over here - I
guess we brewed it up just for them LOL jane

Like Indiana Jone, I HATE SNAKES! I would never make it in the outback. How
frightening!
Cathy

Had another adventure collecting the mail. I ran over a 6 foot Dugite snake -
they are very venomous.I saw it squirming in the rearvision mirror so decided to
reverse over it and put it out of its misery( reluctantly though as they can
sometimes flip up and you and up carrying them home with you!)After running over
it again we all jumped out to have a look. The car had ripped all its skin off -
so there was this mangled naked snake - a very sick sight. The boys asked if
they could touch its tail - sure I said its definitely dead. So both boys knelt
down and grabbed its tail. It flicked up suddenly and did we all jump a mile-
then ran to the car. I had to laugh - my 2 brave boys were packing themselves.
Jane

In a message dated 1/20/2000 7:10:51 PM Eastern Standard Time,
Multiple01@... writes:
<<
IF I HAD MY LIFE TO LIVE OVER
by Erma Bombeck
I would have talked less and listened more.
I would have invited friends over to dinner even if the carpet was
stained and the sofa faded.
I would have eaten the popcorn in the "GOOD" living room and =
worried
much less about the dirt when someone wanted to light a fire in =
the fireplace.
I would have taken the time to listen to my grandfather ramble =
about his youth.
I would never have insisted the car windows be rolled up on a =
summer
day because my hair had just been teased and sprayed.
I would have burned the pink candle sculpted like a rose before it
melted in storage.
I would have sat on the lawn with my children and not worried about
grass stains.
I would have cried and laughed less while watching television and
more while watching life.
I would have gone to bed when I was sick instead of pretending the
earth would go into a holding pattern if I weren't there for the =
day.
I would never have bought anything just because it was practical,
wouldn't show soil or was guaranteed to last a lifetime.
Instead of wishing away nine months of pregnancy, I'd have =
cherished
every moment realizing that the wonderment growing inside me was =
the
only chance in life to assist God in a miracle.
When my kids kissed me impetuously, I would never have said, =
"Later.
Now go get washed up for dinner."
There would have been more "I love you's" ... more I'm sorry's"...
but mostly, given another shot at life, I would seize every minute
...look at it and really see it ... live it ... and never give it =
back.
In honor of women's history month and in memory of Erma Bombeck who
lost her fight with cancer. Here is an angel sent to watch over you

I'm afraid I have 356 unread e-mail. I've been trying to read through them but
each day there are more so I've decided to delete and start a fresh. My
apologies if I've missed any problems or milestones - you know my thoughts are
with you all anyway. Bridget is now eating solids and rolling from back to tummy
but usually she gets stuck on her side and I hear her squeaking away to be
rescued.One thing different I've noticed about her compared to my other kids
when they were babies - is that she loves soft toys - and I mean loves to the
point of obsession. She has 2 favourites and will literally spend a good hour
tosssing them around - dropping them - picking them up etc..She cries if she
hasn't got them near her and prefers them much more than rattles and other hard
toys. I thought perhaps it had something to do with the hypotonia - easier to
handle. Has anybody else noticed this with their babies or is this just a
Bridget thing. Jane

To those mums of bubs who were diagnosed early and are now eating solids.
Bridget has started eating rice cereal from a spoon and I was wanting to try
some new foods. The dietician and I were talking on the phone yesterday and both
thought we might need to select foods carefully so as not to introduce her to
foods-tastes that she might not be able to enjoy later.Any thoughts on this or
are we just being paranoid. Jane

Sorry to confuse you
Dad 8/2
pap 8/27
brother 8/26
me and Brett 8/20
Rick 8/25
Amy

That was great!!!!! A real tear jerker! But isn't it so true!!
Amy

I really hope none of you have an insurance company like this! -Ang
You know that you've joined a REALLY BAD HMO if:
* The annual breast exam is conducted at Hooter's
* Directions to the Dr's office include "Take a left when
you enter the
trailer park"
* The tongue depressors taste faintly of Fudgesicles
* The only proctologist lists his address as Rotorooter
* The Lone Star Bar and Grill is an approved pharmacy
* Your primary care physician is wearing the pants you gave
to Goodwill
last month
* Preventive Care Coverage includes "an apple a day"
* Your Prozac comes in colors and has little "m"s on each pill
* The only 100% covered expense is embalming
And the best one:
*Your Viagra prescription includes a popsicle stick and some
duct tap

HOW CUTE!!! BUT DINING ON FROG LEGS? YYYUUUCCCKKK!!!!
Amy

Mikey is desparately trying to crawl. He will see one of his toys in front
of him but he can't coordinate his arms and legs together yet to move
forward. So he realized that now that he can roll continuously(sp?) and turn
his body around, he will eventually get where he wants to be. We usually let
him go unless he gets too close to cords or some other thing he's not
supposed to get into. We just have to keep a close eye on him because I
never knew a baby could roll so fast!!! Of course depending on where we're
playing, sometimes he tries to get under the bed. Another no-no since we
would probaby have to move the bed to get him out! You guys should see the
positions he gets himself into in his crib, and that's while he's sleeping!
He also hasn't slept through the night in 4 days! So by the time I change
him and feed him, i've lost an hour of sleep because he gives me that "Come
on, Mommy! You know you want to play with me!" smile, and how can I resist
my angel who slept about 22 hours or more when he was first born!
More good news, his first tooth finally broke through on Sunday! Now he's
his usually perky self again. Of course, he never screamed in agony
(surprise, surprise! LOL) He would just get fussy and wimper till we gave
him some orajel.
Finally, he has a new word "Hi-ya!" he says it all the time - in his crib,
to his toys, to us when we're playing with him, and very loudly in Church
right after people tell us what a good baby he is! He was trying to get a
woman's attention a few pews back. The little flirt!
Anyway, sorry to go on bragging like that but I'm just a proud Mommy! ~Nikki

You have just received an animated greeting card from Angela
You'll see the personal greeting by using the following Web location.
http://www2.bluemountain.com/cards/box7465x/kyf9fiyhphrrrp.htm
(Your greeting card will be available for the next 90 days)
There is no charge for this service! :) HAVE a good day and have fun!

Vicki, Yes Yes it is finally coming thru as 6... Tina

ok..
I had a setting goofed up. I am trying one more time... the address should be
mysix.. let me know if this comes through as my six or myfive..
tanx.
V.

From: "cwinslow" <cwinslow@...
<(I wish I had my own wings lol )
Cathy,
Actually you do-
Nathan!!!!!!!
Have a safe and productive trip-
Hurry Back to tell us aal about it!!
Bobbi and Matthew

I got your mail but it's coming from myfive not mysix
Velma
Mom to Johnna 14, Chelsea 10, KK 6 {Prader-Willi Syndrome, Asthma and
Amblyopia} and Zoey 2

Sorry guys.. I am trying to get this e-mail working the right way.. Please bear
with me.

Important Lessons Life Teaches You...

For some reason, my e-mails aren't showing up for me to see when I send them...
are you guys getting any e-mail from me? I am getting e-mail from the list, but
not seeing my posts.
Anyone have any ideas?
Vicki

amy,
a while back we had a dad on the list. peter dad to conner. he is a real nice
man. we think he may have stock in GNC..lol anyways he believes is natural
stuff. he told us about flax seed meal and soy lecithin granuals. one helps
with giving the kids energy and the other helps with muscle tone. i dont
remember what does what. anyways i give danny 1 tablespoon each at breakfast
and dinner, you can mix it in cereal, applesauce, danny likes it in yogurt. i
get these things st the groc. store in the health food dept. i get the flax
seed whole & put it thru my coffee grinder. alot cheaper that way.
proud to be dannys mom,
jeanie

Can anyone give me any info on the flax seed diet. I have heard some things
about it but I would really like to find out more.
I still can't get the birthday thing!! I tried but I guess the puter is
smarter than me.!!
Amy
Mom to Sierra 5 PWS and Baby Brett 5 months

In a message dated 1/20/2000 9:46:48 AM Central Standard Time,
Amy2026@... writes:
<< MY Dad, god rest his soul, me, my
brother, my grandfather, my fiance, and my son was born on my birthday
All of these on the same day or just you and your son LOL. I got confused.
My oldest 2 daughters share the same birthday 10-16 one in 85 and one in 89
My son was born on my husband's birthday 12-31
and Zoey ALMOST made it to mine, she just missed me by 4 days! I wanted to
wait until he said I was in danger of having her on the interstate. NOT FOR
THIS GIRL!!!
Velma
Mom to Johnna 14, Chelsea 10, KK 6 {Prader-Willi Syndrome, Asthma and
Amblyopia} and Zoey 2

Debbie,
Where did you find that list-
Bobbi

Once upon a time,

Amy,
I have a copy of this morning prayer
taped to my mirror!!
I LMAO everyday!!!!!
Bobbi

Amy,
I dont know if this is what you are talking about, but I give Nicky flax seed
meal (ground flax seed) and soy lecithin daily. I know that a few others
have been doing this as well. I give Nick about 1 tbs of flax meal and 1 tbs
of lecithin in his cerial at breakfast, and again as an afternoon snack,
mixed in yogurt or applesauce. You can buy whole flax seeds at GNC, or at
larger grocery stores that have a health food section. Same with the
lecithin. I grind the flax seeds in a blender myself, then keep them in the
fridge. It seems to give Nick a little more enrgy, and even curb the
appetite a little bit. I mostly follow the "Omega Diet", which is similar to
the PWS food pyramid. Less carbs, more green veggies, more fish and less red
meat or poultry. I also watch what kind of fats I use. I try not to buy
anything with hydrogenated oils in it, and I only use canola or olive oil at
home. Here is the website for the Omega diet, I bought the book and its
really been great. I feel better and have more energy myself since starting
this. <A HREF="http://www.teleport.com/~jor/"
Take care
Angela

This is cute
cathy

We got our first "REAL" snow in 2000 here in PA! Sierra has been waiting for
it and now she says it's to cold to play outside!! Go figure. She came in and
said it was cold out she wanted hot chocolate!!
Amy
Mom to Sierra 5 PWS and Baby Brett 5 months

Hi-
I was just wondering about other lists or discussion groups people are
interested in- I know I see some familiar names on the hypotonia list and the
official website-are there others that you enjoy? (Just what I need-more
time on the computer!) LOL
Just Curious
Debbie
Mom to Michael, 15, Jennifer, 13 , Matthew, 9 & Lauren 5 months PWS

Vicki-
Been wondering about that....myfive no longer appropriate!
Debbie
Mom to Michael, 15, Jennifer, 13 , Matthew, 9 & Lauren 5 months PWS

I thought everyone would enjoy this

Well.. I finally got around to doing it..I updated our e-mail address.. we are
now mysix@... the other one.. myfive is now invalid.
Please update the address books.
Vicki

I have so many birthdays in August. MY Dad, god rest his soul, me, my
brother, my grandfather, my fiance, and my son was born on my birthday. What
are the odds of that?!
Amy
Everyone got my dob, does that mean I put it in right? or was it from when i
messed up and just wrote my dob and sent it?

Jeanie,
I have a friend that teaches life line classes, like down kids and he said
that I would be lucky for them to get things rolling before next year. But
thanks to my guardian angel from bLast, she helped me ALOT!!! I am forever
indebted to her!! She is recieving speech and ot through the school!!!
Amy

Cute card, Thanks for sending kids.
Cathy

I tried that but I don't think it worked.
Amy

Schools closed again, snow is coming this way, anyone else getting it. This
is CT.
Cathy

You have just received an animated greeting card from All The PWS Children
You'll see the personal greeting by using the following Web location.
http://www2.bluemountain.com/cards/box7464b/tpz4yhkjdvgdyy.htm
(Your greeting card will be available for the next 90 days)
There is no charge for this service! :) HAVE a good day and have fun!

That happended with mine too.
Cathy

More hugs {{{{{{{{{{{{{{{[hugss}}}}}}}}}}}}}}}}}]]
Cathy

That's a good one!!
Amy

I hope no one gets angry with me for posting this. I got this offer from
Wrightslaw newsletter. It sounds like a great deal. The special ed book is
one that many of us would like to have anyway, right? I was going to order
this last week when everyone was talking about it but I had to wait until
payday which is next week. I just wanted to share in case anyone else is
looking to get the book.
FREE BOOKS FROM WRIGHTSLAW!
WRIGHTSLAW: SPECIAL EDUCATION LAW
and
WRIGHTSLAW: TACTICS & STRATEGY MANUAL
This message is from Pete and Pam Wright. We want to ask for your
help.
* * THE GOOD NEWS * *
Because you are computer literate, surf the Internet, and
subscribe to online newsletters, you are on the âcutting edgeâ
of the Information Age.
By using WRIGHTSLAW and other sites, you have access to the
latest information, cases, and legal developments. If you donât
know the answer to a special education question, you probably
know where you can go to find the answer. This is good news.
We have been blessed by very strong sales of WRIGHTSLAW: SPECIAL
EDUCATION LAW. About 90 percent of our sales have been through
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In December, four months after WRIGHTSLAW: SPECIAL EDUCATION LAW
was published, the book went into the second printing. This is
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* * THE PROBLEM * *
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Most parents and teachers of children with disabilities donât
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WRIGHTSLAW: SPECIAL EDUCATION LAW is in too few bookstores.
Harbor House Law Press receives several calls a day from people
who tried to buy WRIGHTSLAW at their local bookstore but
couldnât because the store doesnât stock the book.
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Bookstores stock books to satisfy customer demand. If WRIGHTSLAW:
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about the law will diminish.
* * THE OFFER * *
Purchase WRIGHTSLAW: SPECIAL EDUCATION LAW from your local retail
bookstore (ISBN: 1-892320-03-7; $29.95).
SEND THE FOLLOWING INFORMATION -
1. A clear legible photocopy of your SALES RECEIPT that includes
the name of the book and purchase price (circled), date of
purchase, AND the name and location of the bookstore;
AND
2. Your name, shipping address, telephone number, and email
address (written legibly);
TO
WRIGHTSLAW PROMOTIONS
Harbor House Law Press
P. O. Box 480
Hartfield, VA 23071
You will receive a FREE copy of WRIGHTSLAW: TACTICS & STRATEGY
MANUAL and a FREE copy of WRIGHTSLAW: SPECIAL EDUCATION LAW
(VALUE: $49.90).
WRIGHTSLAW: SPECIAL EDUCATION LAW is a wonderful gift for a
friend, family member, neighbor, or special educator. You can
donate the second book -- to your school, special education
director, or school board member. One person purchased a copy of
the book as a gift for the school board attorney who taught her
special education law class. You can keep one book at home, one
at work, or . . .
* * CONDITIONS * *
This Offer is good until FEBRUARY, 19, 2000. The envelope that
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This OFFER is limited to one per household.
* * ORDER NOW! * *
ORDER NOW to give your bookseller time to get WRIGHTSLAW: SPECIAL
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Information about WRIGHTSLAW: SPECIAL EDUCATION LAW is at -
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Velma
Mom to Johnna 14, Chelsea 10, KK 6 {Prader-Willi Syndrome, Asthma and
Amblyopia} and Zoey 2

Good luck Cathy!!!
Velma
Mom to Johnna 14, Chelsea 10, KK 6 {Prader-Willi Syndrome, Asthma and
Amblyopia} and Zoey 2

Ok guys, I'm gettin g nervous. Nathan and I leave next Monday for
Cleveland, Ohio for the PWS research study with Dr. Cassidy. Please start
praying for us/me. I still get nervous on planes, especially take off and
landings. I went out and bought a couple of those wheeled lugage carriers
on sale. One is big and one is Nathan size. i made sure he could pull it
at the store if I need a hand. I figured its a lot of long hallways in the
airport and the hospital. I sure am glad Vickster is coming to see us. Hey
anybody seen her on? The hospital told me to take a cab from the airport to
the hospital. Does anyone know if that is the most practical in Cleveland?
Any new people that are interested in the studies just let me know. We 're
in the next one at Yale in March. I should be a pro at this after the
second one. That school will regret ever messing with me. I should have
enough reports to blow them away.
Cathy, Nathan's mom

Congrats on the new job. It sounds like a keeper.
Velma
Mom to Johnna 14, Chelsea 10, KK 6 {Prader-Willi Syndrome, Asthma and
Amblyopia} and Zoey 2

We haven't found a house but I've called around.
NO ONE from the school board called me back BUT someone from the school did
send a note home with Chelsea noting that testing had begun and we have an
appointment on Jan 26 to discuss my concerns and I had to sign and return
this. I made a copy for my own records first.
Zoey went over to my sister's house today and I never saw the puppy. Zoey had
a blast though she didn't want to come home with me : (
Velma
Mom to Johnna 14, Chelsea 10, KK 6 {Prader-Willi Syndrome, Asthma and
Amblyopia} and Zoey 2

In a message dated 1/19/2000 2:18:23 PM Central Standard Time,
Amy2026@... writes:
<< How do you put your birthdays in the list?
cut and paste.
just click at the beginning of the list and HOLD the mouse button down until
the end of the list. Then let go.
right click scroll down to copy
then open some mail and right click in the body of the letter and click paste.
Velma
Mom to Johnna 14, Chelsea 10, KK 6 {Prader-Willi Syndrome, Asthma and
Amblyopia} and Zoey 2

ANOTHER August person. you should have been here last August. We were a
partying bunch. We had birthdays each week.
Velma
Mom to Johnna 14, Chelsea 10, KK 6 {Prader-Willi Syndrome, Asthma and
Amblyopia} and Zoey 2

velma,
does the school know she is being terrorised at school by this kid?? let them
know IN WRITING. and let them know also that YOU know the school can & will be
held liable if it is not stopped. (ohh i love it when i know something..lol)
proud to be dannys mom,
jeanie
ps. also remind them(the school) that aunt jeanie will be there soon & i will
get ugly if i need to.

I need hugs and I came here to get them. Sorry.
Most of you know the hell I"ve been through with Chelsea. Well we are headed
back there again. Her grades are dropping, her self-esteem is dropping and I
fear the anorexia will re-surface.
Last year she was straight A's. You could not have asked for a happier,
healthier kid. IT was great after nearly losing her the year before. Then I
got the test scores on her IOWA standardized testing and paniced because she
scored so low EVERYWHERE. I requested IN WRITING that she be tested for
special education. The principal told me that she recommended 504 because
Chelsea's reading scores and grades were excellent and she was on target. She
felt the low standardized test scores were due to test anxiety. So she sends
me to the parent facilitator. He says.. well we only have a few weeks of
school left so we will evaluate her at the beginning of the school year.
GREAT. I had to sign all of the forms right then so they could begin testing
immediately. FINE.
Then I was told they would wait for 3 weeks after school started for testing
to be done. OK.
So 9 weeks later she gets her report card along with a letter saying she was
tested in reading at the beginning of the school year. Her NEW reading score
was 2nd grade level. I go to the parent facilitator and ask.. WHAT about the
504 testing? WHAT"S with this new reading score? Is it accurate? DId she flub
it? If it's accurage what the hell happened in 3 months time?
He tells me I'm panicing over insignificant scores. That's just an inschool
thing. It doesn't count for anything. And give them 2 weeks to finish her
testing. OK here we are.. they keep putting it off. Report cards are due out
again and I know already that Chelsea's isn't what it could be.
Last night she has social studies homework. There are 15 questions to look up
in the book and an essay to write. All of this is in cursive. I have
requested them to do her stuff in print. The teacher writes in cursive and
expects the children to do so WHY??? where have you ever seen on a job app..
And do you read and write in cursive?
NO cuz no one gives a shit except this teacher! AHH
so we spend 3 hours on this crap with her steadily begging me to help her and
me telling her NO she has to do this on her own. I knew she would never get
it done. I wanted to use this to make my point to the school.
By the time she translates cursive writing into print in her mind she's lost
the entire meaning of the damned question. It doesn't make sense anymore.
I go to school and I have my conference. I'm told....
2 F***ing weeks again!!! I'm so mad. I nearly cried in the office.
her self esteem is dropping and I fear that the anorexia will return. I cant
watch this happen. I left the school pissed.
then I called my special ed god. He tells me that he doesn't do regular ed
students. I tell him that's my whole point. I requested special ed testing
last year and NOW I keep hearing it takes 2 weeks. He asks if my request was
in writing. He says GREAT and told me to call another woman. Tell her my
request was made in writing and who to and since this was last year I wanted
to know where they were in the testing process? I told him they weren't
testing her. He says... telling her this request was in writing will spark
their butts. THANK YOU AUNT JEANIE!! All year I've put off being ugly cuz I
just dont have the strength for this battle. I SHOULD NOT have to do this.
Now I know it's coming down to life or death again and I have to do it.
I'm waiting for this woman to call me back. That's killing me. I called
another school to see about having her transferred. They cant take her
because they are full. I dont know what to do now.
And as if academic trouble is not enough now we have an asshole gangster kid
bothering her. He's threatened to beat her up, he's threatened to poison our
dog. He came here the other night and I called the police. And then he
threatened her again. She's under a lot of stress. WHAT else can I do? She's
stuck in a school where they let gangsters terrorize her and keep taking 2
weeks to test her. This is the LONGEST 2 weeks of my life!
Well I'm off to househunt. If I can find a house in that school district then
I can go to that school..contract school or not! There is a GOD!! Now pray
for guidance! If God really means this path for us, I'll find a rent house. I
keep finding open windows for a reason right?
Let me hear prayers. and THANKS so much for letting me rant.
Velma
Mom to Johnna 14, Chelsea 10, KK 6 {Prader-Willi Syndrome, Asthma and
Amblyopia} and Zoey 2

Velma;
Well, dying to know, what did you find out today? Did you get the call you
were waiting for? Was it of any help to you? Were you able to look into any
new places to live? Too many questions I know, but I've been thinking about
you for most of the day. How was Chelsea's day? Did that bully bother her
today? You just have too much going on, you need to fill us in when you can.
Oh yea, how's the puppy doing?haha. I hope Zoey has been laying low for you
today. (NOT)
Faith/Mom2-6

I'm both. I have kkpws61698 for PWS stuff and then JCCZ4 is mine for jokes
and prairie dog stuff. and then PWS gulf coast is for chapter stuff that I've
stuck on the back burner.
Velma
Mom to Johnna 14, Chelsea 10, KK 6 {Prader-Willi Syndrome, Asthma and
Amblyopia} and Zoey 2

thank you

Linda,
Could you mean Tacoma, WA? My daughter, Lauren was diagnosed at Mary Bridge.
Debbie
Mom to Michael, 15, Jennifer, 13 , Matthew, 9 & Lauren 5 months PWS

amy,
if your daughter is in a public school (K-12)(EI can start as early as 6
months), under fed. law they must provide services. if she is in a private
school and they receive fed. money...they must provide services. remember to
put ALL your requests in writing and ask for their response in writing. that
way they cant say you never asked. make sure to keep a copy for yourself.
proud to be dannys mom,
jeanie

Velma,
I will keep you in my thoughts and prayers. I know how hard it is to get kids
the help they need in school. Sierra is in kindregarten and noone wanted to
listen to me to get an aide in the class for her since they don't have any
kind of special ed for kindergarteners. Finally, my contact at bLast
intervention went to the school and we had about 5 meetings and they did get
an aide inthe class for her. They told me that they wouldn't be able to start
any kind of special ed till the 1st grade but by me pushing and with Kelly's
help they didn't make her wait that long. I know it's tuff but everything
will work out.
Take care and don't let the ass holes in the world get you down!!
Amy
Mom to Sierra5 pws and Baby Brett 5 months

When Kelley was in NICU the nurses nicknamed her
Kelley Beth, but my brother always called her Kelley
Bell.

Nikki~
I'm 1-3-58
Matt-Matt is 5-3-95
I graduated May 22, 1976!
Ugh! I'm an old redhead!
LOL
Bobbi

Velma;
What is your home e-mail address? is it kkpws61698? Or is it JCCZ4? I sent
you some mail earlier today but sent to to the kkpws. I don't know if your
going to get it or not, please let me know. Hope your day got better, You
were in my prayers today!
Faith/Mom2-6

In a message dated 1/19/2000 5:21:16 PM Eastern Standard Time, JCCZ4@...
writes:
<<
<A HREF="http://www.funone.com/fun/pf/"

Hi All,
I am so excited because Tom just got an offer for a new job. He had been
trying to get one now for about a month. It will be about 3000 more a year
unless he gets some overtime then it will be more. I am just so happy that I
had to share with someone. The only thing I worry about is the insurance.
Renee
Mom to Ryan 8, Beckah 5, Robbie 31/2 PWS and little Raelynn 3 months

Wow Amy! my birthday's 1-2-76! I still may be the youngest person on the
list but not by as much! Thank you!!!!!!! ~Nikki

Amy I do it kinda a@#backwards-
I hit farward , then go into the spot-like Jan 3 was mine and just added
it!I don't think that's the way you're really suppose to do it- but I never
can do things the easy way!!!
Bobbi

<A HREF="http://www.funone.com/fun/pf/"
Velma Jones
Mom to Johnna 14, Chelsea 10, KK 6 {Prader-Willi Syndrome, Asthma, Amblyopia}
and Zoey 2

Howdy, all. Linda here. Been gone for a while. I used to have the screen
name "lindaand4". Still do, but I like "sycomommy1" better. It fits.
I dropped out when husband Keith got pancreatitis back in October, followed
by lack of time, computer problems, the holidays. You get the picture. I'm
still trying to work out the bills from hubby's hospital stay -- he didn't
have insurance at the time. But we're lucky he's still alive. It was a
terrible episode.
But the good news is I have a scanner now. Attached is a picture of my boys
on top of the bunk bed. Spenser (4 - PW) is on the right. Bram (6) is
holding Kennith (21 mos.).
Later, Linda

In a message dated 1/19/2000 3:21:39 PM Eastern Standard Time,
Pam.Weaver@... writes:
<<
The Blonde and her cell phone
A young man wanted to get his beautiful blonde wife something nice for
their first wedding anniversary. So he decides to buy her a cell phone.
She is all excited, she loves her phone. He shows her and explains to
her
all the features on the phone.
The next day the blonde goes shopping. Her phone rings and it's her
husband, "Hi hun," he says "how do you like your new phone?"
She replies "I just love, it's so small and your voice is clear as a
bell but there's one thing I don't understand though."
"What's that, baby?" asks the husband.
"How did you know I was at Wal- Mart?"

In a message dated 1/19/2000 2:34:48 PM Eastern Standard Time,
Pam.Weaver@... writes:
<<

Hi Gloria, I was just thinking of you today and wondering about
Jaylene's progress. Don't be discouraged-I'm sure that she will soon
benefit from GH.
The dietician is Karen Balko from the PW Clinic in Toronto. She can be
reached at 416-603-5800, ext 2961. Karen is always happy to talk to
other dieticians. She has the RYG materials which she purchases from
Pittsburgh so you could also try contacting Pittsburgh for info. if you
don't get an answer.
I'm thrilled to hear that Manitoba families are being approached-before
you know it there will be a Manitoba Chapter active again. Please let me
know of any new names that you come across, so that I can keep track.
Let me know how you enjoy the conference and the forum.
Nita Goldband, director of Ontario Prader-Willi -home of 248 wonderful
people with PWS.

8/20/75

That is really a good statement. For everybody!!
Amy

How do you put your birthdays in the list?
Amy

In a message dated 1/19/2000 8:01:25 AM Eastern Standard Time,
Pam.Weaver@... writes:
<<

Thank you. She is still in critical condition. They said her body temperature
had dropped into the 70s, but they got that back up to normal and her heart
was strong. She didn't seem to have any injuries from falling or anything. I
don't know what the danger is at this point from the hypothermia. Pneumonia?
Waiting it out to see if there was any permanent physical or brain damage? I
felt so sorry for her parents when they interviewed them.
Lucille

Sorry if some of these may be offensive to you. They came to me this way,
and I'm just passing them on. I think you'll find most of them funny. I did.

Oh, Velma-
Wrote that last post before I read the next one about Chelsea. Trying to
think of solutions, but you are much more able than I. In the meantime,
prayers are being sent your way. I know there is an answer out there for
you.
Happy house hunting-better things (house, school situations, Chelsea's
self-esteem, freedom from bullies) MUST be around the corner!
Debbie
Mom to Michael, 15, Jennifer, 13 , Matthew, 9 & Lauren 5 months PWS

I need hugs and I came here to get them. Sorry.
Most of you know the hell I"ve been through with Chelsea. Well we are headed
back there again. Her grades are dropping, her self-esteem is dropping and I
fear the anorexia will re-surface.
Last year she was straight A's. You could not have asked for a happier,
healthier kid. IT was great after nearly losing her the year before. Then I
got the test scores on her IOWA standardized testing and paniced because she
scored so low EVERYWHERE. I requested IN WRITING that she be tested for
special education. The principal told me that she recommended 504 because
Chelsea's reading scores and grades were excellent and she was on target. She
felt the low standardized test scores were due to test anxiety. So she sends
me to the parent facilitator. He says.. well we only have a few weeks of
school left so we will evaluate her at the beginning of the school year.
GREAT. I had to sign all of the forms right then so they could begin testing
immediately. FINE.
Then I was told they would wait for 3 weeks after school started for testing
to be done. OK.
So 9 weeks later she gets her report card along with a letter saying she was
tested in reading at the beginning of the school year. Her NEW reading score
was 2nd grade level. I go to the parent facilitator and ask.. WHAT about the
504 testing? WHAT"S with this new reading score? Is it accurate? DId she flub
it? If it's accurage what the hell happened in 3 months time?
He tells me I'm panicing over insignificant scores. That's just an inschool
thing. It doesn't count for anything. And give them 2 weeks to finish her
testing. OK here we are.. they keep putting it off. Report cards are due out
again and I know already that Chelsea's isn't what it could be.
Last night she has social studies homework. There are 15 questions to look up
in the book and an essay to write. All of this is in cursive. I have
requested them to do her stuff in print. The teacher writes in cursive and
expects the children to do so WHY??? where have you ever seen on a job app..
And do you read and write in cursive?
NO cuz no one gives a shit except this teacher! AHH
so we spend 3 hours on this crap with her steadily begging me to help her and
me telling her NO she has to do this on her own. I knew she would never get
it done. I wanted to use this to make my point to the school.
By the time she translates cursive writing into print in her mind she's lost
the entire meaning of the damned question. It doesn't make sense anymore.
I go to school and I have my conference. I'm told....
2 F***ing weeks again!!! I'm so mad. I nearly cried in the office.
her self esteem is dropping and I fear that the anorexia will return. I cant
watch this happen. I left the school pissed.
then I called my special ed god. He tells me that he doesn't do regular ed
students. I tell him that's my whole point. I requested special ed testing
last year and NOW I keep hearing it takes 2 weeks. He asks if my request was
in writing. He says GREAT and told me to call another woman. Tell her my
request was made in writing and who to and since this was last year I wanted
to know where they were in the testing process? I told him they weren't
testing her. He says... telling her this request was in writing will spark
their butts. THANK YOU AUNT JEANIE!! All year I've put off being ugly cuz I
just dont have the strength for this battle. I SHOULD NOT have to do this.
Now I know it's coming down to life or death again and I have to do it.
I'm waiting for this woman to call me back. That's killing me. I called
another school to see about having her transferred. They cant take her
because they are full. I dont know what to do now.
And as if academic trouble is not enough now we have an asshole gangster kid
bothering her. He's threatened to beat her up, he's threatened to poison our
dog. He came here the other night and I called the police. And then he
threatened her again. She's under a lot of stress. WHAT else can I do? She's
stuck in a school where they let gangsters terrorize her and keep taking 2
weeks to test her. This is the LONGEST 2 weeks of my life!
Well I'm off to househunt. If I can find a house in that school district then
I can go to that school..contract school or not! There is a GOD!! Now pray
for guidance! If God really means this path for us, I'll find a rent house. I
keep finding open windows for a reason right?
Let me hear prayers. and THANKS so much for letting me rant.
Velma
Mom to Johnna 14, Chelsea 10, KK 6 {Prader-Willi Syndrome, Asthma and
Amblyopia} and Zoey 2

She was sssoooo excited! She said look MOm I can make a "Y"!! We clapped and
clapped! Then she asked how to spell my name, I told her and she wrote it,
ALL BY HERSELF!! She had to call everyone we know!!!
Oh Yeah! I think the racoon stories yesterday jinxed me! We were on a mad
coon hunt at bed time last night! Sierra has one stuffed racoon named Ricky.(
The only other animal that gets any attention, next to her doggys!LOL)
Anyway, she played with him all day and wanted to sleep with him last night
and couldn't find him anywhere! We searched the whole house 4 times and
couldn't find him. I tried to convince her to sleep with Sparky(her fav dog)
She said nnnnoooo! Sparky's dumb I want Ricky! Holy Tantrum!!! We never did
find Ricky but I finally convinced her to sleep with Spotty the dalmation!I
didn't think we ever going to bed!!
Amy
Mom to Sierra 5 PWS and Baby Brett 5 months

Here it is Tammy...

Tammy,
i know someone has it. It has been posted before. Anyone Have Welcome to
Holland?
Cathy

Tammy,
I got your second picture, too. Your boys are adorable! And how exciting that
Zach could crawl up there all by himself. Usually when I download pics they
show up right away, but with yours I had to go back and open the file that I
saved them in to see them. (Did that make sense?) I noticed that the icons
with your pics were different from the others too (I'm not very
computer-literate, so that's the best I can do for an explanation!) Oh well,
I'm learning! Thanks for sharing the pictures.
Patrice

I didn't get the first post with the last pic yet (did that make any sense?
It's late.). Anyway- Patrice replied that she liked the pic (thank you,
BTW), so it must have gone through. I'll blame hotmail again. That last
pic was when Zach was a couple of weeks old and Greg was about 18mo. THIS
one is more recent, in November. Greg is just three and Zach was 19 1/2 mo.
They climbed up on top of the toybox to read stories. Yes, Zach climbed
up there by himself.
~~Tammy, mom to Greg, 3yrs, and Zach, 21mo, PWS
and wife to Mike who turns 30 this month and is,
therefore, MUCH older than me. :)

I am wondering if any of you have the poem "Welcome to Holland"? If someone
has this writing could you please email it to me, I cannot find my copy and
would like to enclose it with some information for a newly dx family in our
state. Thanks for your help.
Tammy Eric's Mom
PWSA of Iowa
Zwingle, IA
ktcaedav@...

Cathy;
You said that beautifully! Could not have said it better myself. Thank you.
Faith/Mom2-6

Sybil,
I am sorry you had to experience this. It is so hard to know what the right
thing to do is at times, but when you are the mom and it is your child getting
hurt it just makes you want to scream at people. I am trying to decide myself at
how much information I should give people to "educate" them. I know Vicki wrote
a newsletter type info sheet on Davey explaining PWS to the parents in his
class. I have been stuggling whether I am brave enough to do something like
that which I can give to parents, teachers, etc. in both school and church..
Would it help them/me in dealing with isssues as they come up. I guess the fear
I have is of people 'labeling" him, but then again I think people are doing that
anyways but of what they see, not of what they "know" (or of labeling me a "bad
mother") for doing the things I do. I got upset at a mother the other day when
she cut Nathan off when he was talking and treated him like he was being rude
interruptting her, he starts crying, so I ended up telling her not to rebuff him
so abruptly. She remarked she was just treating him like she treats her kids.
Huh? So I had to explain that Nathan has a genetic birth defect and isn't like
her kids. By the way one of them freaks out about coming out of the house.
Hmmmm I wonder what she is doing to her own kid. I showed a video on PWS at
his school last month to some of the staff. I cryed through the whole thing in
front of them. I don't know if it reached anyone besides me. I will know the
next time something comes up and how they handle it. They are learning I am not
going to let them do their own thing whatever that is, cause it doesn't work.
Having pizza parties every week is a little much. Thats the trouble even in
public schools. Once a parent gets something going they think it is permanent.
Well people and the world change. Just remember she is a parent just like you
and you have ideas that could benefit the kids even better. Even in a private
school they shoulld be teaching good nutrition. Bring that up with the head
administrator. How are they teaching good nutrition by feeding the kids pizza
every week ask them! What happened to the food groups and the emphasis on low
fat, low sugar foods. They should be setting good patterns for the little guy
when they are young
let me at her. I'll straighten her out for you. Now I'm on a roll. No one is
going to hurt little angel rose. Send her that picture, that should do it.
Tell her you want your Rose around for a long time and you'll do whatever you
can to help that sweety. You can do it. Chin up. Don't let some bully mom
ruin your day. I'm here for you, sore butt at all.
Cathy

Ang and Joan,
Rick and I were chuckling and smiling away reading the description of Nicky's
packing, the cheese, the salt and pepper shakers, etc. lol, and I was
thinking...I think I love that kid - THEN we read the story about the muffin and
I thought...no, I know I love that kid!!! What a sweetie - even though
motivated by a muffin LOL .... Sounds like Kelly when she says "...and who
would like a drink? I'd be happy to get it for you" ... so I play along and say
"oh thanks Kel I'd love a drink" ...out she goes to the kitchen to pour it - and
Rick, Ryan and I just crack up .... Ryan says "Mom, WHY doesn't she just say
'can I please have a drink' - instead of asking who would like one, and then
waiting for one of us to say .. would you like one too Kelly?" LOL We've had
this conversation so many times and he just can't figure that one out ....
Anyway..loved the stories - thanks for making us smile!
Nancy

Well I tried Corel, MGI, and Adobe and couldn't get it to open.
Velma
Mom to Johnna 14, Chelsea 10, KK 6 {Prader-Willi Syndrome, Asthma and
Amblyopia} and Zoey 2

Gloria,
Being that Rose was not diagnosed until she was 3.5 yrs old, her therapists were
always "treating the child and not the syndrome" as they used to say. Rose's
hypotonia is global and that has been the main concern in all her therapies. Her
articulation in speech is poor due to low muscle tone therefore the Sp Therapist
designs activities to promote proper lip closure and to strengthen all the
facial muscles. Non of Rose's therapists have treated a child with PWS however
they all have seen older children who have had it, at some point in their
career.
Perhaps your therapist would want to contact Dr. Wharton or Dr. Levine in Boston
or The Children's Institute in Pittsburgh. I have heard very good things about
both. Good luck.
Sybil

If I am doing this right this should be Greg and Zach when Zach first came
home from the hospital at about two weeks.
~~Tammy, mom to Greg, 3yrs, and Zach, 21mo, PWS
and wife to Mike who turns 30 this month and is,
therefore, MUCH older than me. :)

Don't even mention ice skating to me right now, right Angela!
Cathy

Today was another warm beautiful day. And in your honor tonight I made
homemade chicken noodle soup. It was fabulous! I was thinking of you all! Get
warm and get well
Velma
Mom to Johnna 14, Chelsea 10, KK 6 {Prader-Willi Syndrome, Asthma and
Amblyopia} and Zoey 2

Oh, Velma
This sounds just like something I would do. Just when you think you have
them all figured out......
Debbie
Mom to Michael, 15, Jennifer, 13 , Matthew, 9 & Lauren 5 months PWS

I know some of you need to thicken baby formula with cereal and you may
already know this, but I just found a formula made by Enfamil called Enfamil
AR (stands for already thickened with rice) If anyone is interested, some
stores carry it or it is available by mail at their web site.
Debbie
Mom to Michael, 15, Jennifer, 13 , Matthew, 9 & Lauren 5 months PWS

It's only fair that since I complained so much about that boy losing things I
should go on record as saying that his glasses were found today.
He put them inside the glasses case and put them away just like he was
supposed to. I never LOOKED for them being where they were supposed to be cuz
he NEVER puts them up. This time he switched just to make me look bad. It's
all a conspiracy but a funny one never-the-less
Velma
Mom to Johnna 14, Chelsea 10, KK 6 {Prader-Willi Syndrome, Asthma and
Amblyopia} and Zoey 2

LMAO YES that was tasteless... but funny..
Ang

Faith... that wasnt nice! LOL I'm freezing!!!! I've lived in Buffalo most
of my life, you'd think I'd be used to it by now.. Every year I say I'm
moving to Florida! I might just show up on your doorstep one of these days.
(with my own box, of course. Wouldnt want to impose..) LOL
Angela

Amy,
I dont know what to tell you with this one. If she wont say why is seems to
be upset with them, then what do you do? I guess just talking to her. If
you can get her to open up about why she is angry, it would solve a lot of
problems. Sorry! Good luck!
Angela

I got this today and I got tickled at it. I hope no one finds it offensive.
If you do please dont vote me off the mailing list OR delete me from your
email list. Just tell me to get a grip.
The Chain Mail Spoof
Dear......
I know you all are very caring people:
I am a very sick boy little boy. My mother is typing this for me, because I
can't. She is crying. Don't cry, Mommy! Mommy is always sad, but she says
it's not my fault. I asked her if it was God's fault, but she didn't
answer, and only started crying harder, so I don't ask her that anymore.
The reason she is so sad is that I'm so sick. I was born without a body. It
doesn't hurt, except when I go to sleep. The doctors gave me an artificial
body. My body is a burlap bag filled with leaves. The doctors said that was
the best they could do on account of us havin' no money or insurance. I
would like to have a body transplant, but we need more money.
Mommy doesn't work because she said employers don't hire crying people. I
said, "Don't cry, Mommy," and she hugged my burlap body. Mommy always gives
me hugs, even though she's allergic to burlap, and it chafes her real bad.
I hope you will help me. You can help me if you forward this e-mail.
Dr. Van Nostrem from the clinic said if you foward this e-mail then Bill
Gates will team up with AOL and do a survey with NASA. Then the astronauts
will collect prayers from school children all over America and take them up
to space so that theangels can hear them better. Then they will go to the
Pope, and he will take up a collection in church and send the money to the
doctors. The doctors could help me better then. Maybe one day I will be
able to play baseball. Or maybe just use my lungs and heart, when the
doctors make them. The doctors said that every time you forward this
letter, the astronauts can take another prayer to the angels.
Please help me. Mommy is so sad, and I want a body. I don't want my leaves
to rot before I turn 10. If you don't forward this e-mail, that's OK. Mommy
says you're a mean heartless shithead who doesn't care about a poor little
boy with only a head. She says that if you don't stew in the raw pit of
your own guilt-ridden stomach, she hopes you die a long slow horrible death
so you can burn forever in hell. What kind of goddamned person are you that
you can't take five fucking minutes to forward this to all your friends so
that they can feel guilt and shame for the rest of their day, and then
maybe help a poor, bodiless nine-year-old boy?
Please help me. This really sucks. I try to be happy but it's hard.
I wish I had a puppy. I wish I could hold a puppy.
Thank You.
Billy 'Smiles' Evans,
the boy with just a head.
And a burlap sack for a body.
Velma Jones
Mom to Johnna 14, Chelsea 10, KK 6 {Prader-Willi Syndrome, Asthma, Amblyopia}
and Zoey 2

In a message dated 01/18/2000 6:30:02 PM Eastern Standard Time,
Amy2026@... writes:
<< I found all the little knick-naks in about 6 little dress-up
pocketbooks!!
She and Nicky would get along GREAT. Give that boy a BAG, and he'll pack it
with ANYTHING. All of his Pokemon are in one BAG, all of his Batman guys in
another BAG, Star Wars in yet another BAG. You should see him pack when he
goes to gramma's. No clothes, but maybe his pillow. And dad's dirty
underwear. And the toilet paper roll thing. He came home from gramma's once
with a block of cheese in his bag. From my MIL's house he brought her salt
and pepper shakers. Whenever we go somewhere we have to check his BAG,
because he'll just PACK. (we have to make sure he isnt taking something!)
Talk about OCD, LOL.
I've learned to channel it into housecleaning though.. Give that boy a BAG
and ask him to clean up toys, its done in a flash! LOL (but I have to make
sure he isnt putting things from my shelves into his bag!)
Angela

This kid will not clean her room! Once in awhile I can get her to pick up
toys but it doesn't happen much. Anyway, last night I was cleaning her room
and she has all these little doggy things that sit on her dresser.But they
were gone! I asked her where they were she told me they were lost! As i
cleaned I found all the little knick-naks in about 6 little dress-up
pocketbooks!! That was the first time I have ever seen her do anything like
that. Everyone I found, I laughed a little harder! It was so funny!!
Amy
Mom to Sierra 5 PWSand Baby Brett 5 months

Does this Derrick know that he has to be interviewed online by over 100
people after you and Kelly's dad get through with him?
Lucille
Thanks Lucille :-) you can do a double interview with Kel's Uncle Hugh in
Chapel Hill .... he'll gonna want in on this too! Maybe I'll ship this boy down
there .... for good! LOL It's all been very sweet and innocent but so much fun
to see her act like it's no big deal - yeah right - meanwhile she was bursting!
Nancy

LOL VELMA!!! ...that was point - it was confusing!! ya right - LOL ....I
doubt that you are simple-minded. Bells it is .... that's who she is around
here anyway.
<< (boy this is confusing)
Good LORD! confusing is not the word for it. How about calling YOUR Kelly
"Bells" in this situation and make it easier on us simple minded folks. I'm
laughing here cuz I have to backtrack to see WHICH Kelly/ey did what.
Velma
Mom to Johnna 14, Chelsea 10, KK 6 {Prader-Willi Syndrome, Asthma and
Amblyopia} and Zoey 2

<I didn't confess that I do a search of Johnna's room on a regular basis.
Some
things are just best left untold LMAO
LMAO is right Velma - I don't even do that!!!!
and Bobbi - I'm not a bad Mac...at least I HAD permission .....not like some
people...ahem ..Cindy!!! LOL
Nancy

In a message dated 1/18/00 5:23:50 PM, KKPWS61698@... writes:
<< Get out of bed Sunday morning and head down to Chapel Hill. Have dinner
with
Lucille on Sunday night.
That sounds like a doable stretch--though not giving kids too much time out.
I would have a day to get home, if I get to the conference. New York City is
about 500 miles from my house, and I used to drive that in a long day. I
don't know where Hackettstown is. Maybe on a Sunday you could dodge the
traffic/construction around D.C. that is always a hold up. D.C. is anything
from 3.5 hours for my son as a teenager to 5 or 5.5 hours if weather or
traffic are bad. I think here to Florida would be best as a two-day run,
unless you want to have your second summer of carsick vacationing. Then if
you should end up with lots of time, maybe you could add some sedentary days
here and there?
A palace this ain't but my housing plan by summer (though I never get things
done on time) is to have a bed back in this computer room so I can move in
overnight, a double bed with a single mattress stowed under it for the
"guest" room (so I can house three granddaughters) and my room cleaned up, if
Spartan, with a queen-sized bed and lots of sleeping floor. Anyone is welcome
to stay but has to take potluck with whatever the mother/sister situation is
at the time. Can be a little like living in a hospital/asylum, but I figure
Velma and many of the rest of you would feel at home with that. We have a
small pool for the condo complex and lots of things in the area for kids to
do--planetarium, ice skating--and lots of places to eat out. Unfortunately,
it also gets hot. Didn't do much of anything with my granddaughters last
summer except drive through the car wash because we had a string of 100
degree days.
This is a nice game--hope it works out to be more than that.
Lucille

Balls the size of church bells is an understatement. To bad it didn't have a
happy ending though. I am getting married 10/14/2000. Hope nothing like that
happens to me!!!YIKES!!
Amy
Mom to Sierra5 PWS and Baby Brett 5 months

I've been playing on the pc today trying to plan my conference vacation.
Living optimistically at the moment.
Anyway, I was looking PA to NJ {if Nancy doesn't make it to conference LOL}.
It's 5 hours to Hackettstown. I could leave on Sat. Arrive in Hackettstown
have dinner with the Burch bunch before going to bed.
Get out of bed Sunday morning and head down to Chapel Hill. Have dinner with
Lucille on Sunday night.
Slip down to Florida to meet my sister if she doesn't make it to the
conference. Before beginning the trek back across the coast to head home.
Maybe follow the coast line into south LA for a brief visit closer to home
before heading home.
Course this all depends on how much money I raise and how much time off from
work Cliff gets and how much time my mother gets off {if she even accompanies
us} A lot of IF's but I've been playing on the pc for awhile now and just
having a blast with my little dreams.
Velma
Mom to Johnna 14, Chelsea 10, KK 6 {Prader-Willi Syndrome, Asthma and
Amblyopia} and Zoey 2

In a message dated 1/18/00 2:22:07 PM, cmbmom@... writes:
<< Kelly told my Kelley in her e-mail..yes I
snooped!!...that she danced every slow dance with her
friend Derrick...she sounded quite thrilled!!!
Cindy
Does this Derrick know that he has to be interviewed online by over 100
people after you and Kelly's dad get through with him?
Lucille

Ann & Velma,
I thank you and Dr. Thomas Thanks you
for the Info!!!!!
I knew I didn't have to look far to get
the info I needed!
Ya'll wonderful!!
Bobbi and The Matt-Matt

Hi Bobbi
Here is Dr. Wharton's address and email address:
Robert H. Wharton, M.D.
Spaulding Rehab
125 Nashua Street
Boston, MA 02114-1198
His email address is
Robert_Wharton@...
His phone number is
617-573-2637
His fax number is
617-573-7119
and
His beeper number is
781-896-0208
Talk to you soon.
Ann
Mom to Dylan

Velma,
I read MJ's mail -
Hey he's not old enough to work the
'puter yet!!
Bad Mac!!!!! BAd Cindy!!!!!
LMAO!!!!
Bobbi
Vel, how much do you charge????

In a message dated 1/18/2000 3:25:40 PM Central Standard Time,
macburch@... writes:
<< You're going to have Velma after you for violating Kelley's rights. LOL
Alright. I got onto Nancy about this last night. {Did I inform everyone that
I am Kelly's {Bells} personal lawyer}
Well Nancy mentioned that she was off to send Kelly's email without snooping.
I had to remind her that this is against the 1st amendment and not to be
violating that child's rights.
Looks like there's someone else who has a child in need of my services!
CINDY!!!
Velma
Mom to Johnna 14, Chelsea 10, KK 6 {Prader-Willi Syndrome, Asthma and
Amblyopia} and Zoey 2

In a message dated 1/18/2000 3:25:40 PM Central Standard Time,
macburch@... writes:
<< (boy this is confusing)
Good LORD! confusing is not the word for it. How about calling YOUR Kelly
"Bells" in this situation and make it easier on us simple minded folks. I'm
laughing here cuz I have to backtrack to see WHICH Kelly/ey did what.
Velma
Mom to Johnna 14, Chelsea 10, KK 6 {Prader-Willi Syndrome, Asthma and
Amblyopia} and Zoey 2

Robert Wharton
Spaulding Rehab Hospital
125 Nashua Street
Boston, MA
02114
phone 617-573-2637
fax 617-573-7119
pager 781-896-0208
email Robert_Wharton@...
Velma
Mom to Johnna 14, Chelsea 10, KK 6 {Prader-Willi Syndrome, Asthma and
Amblyopia} and Zoey 2

Jeanie... I think I just busted a vein Laughing so damn so hard.. I completely
forgot Velma's story of KK and the potty thing... On top of that I peed on
the chair.
Sorry made my afternoon ... Tina

Cindy,
yes, I heard... :~D my Kelly told me. Apparently, my Kelly told your Kelley
that she went to the dance....your Kelley emailed back asking my Kelly (boy this
is confusing) if she danced with anyone....did you know that? cute THEN, my
Kelly wrote your Kelley back telling her about dancing "all night" (sigh) with
Derek!!! woohoo Aren't you glad they don't spell their name the same?!?!
What are you doing snooping anyway you bad girl!?? ;~)LMAO You're going to have
Velma after you for violating Kelley's rights. LOL
I have to smile when I see your Kelley always signing Kelley Beck and my Kelly
always signing Kelly Burch (like they think each other won't know who they are
if they don't put their last name on it!!) cute cute cute Even when Kelly hand
writes me a note, signs a card to me or sends a thank you note ... to my MOM
even...she signs Kelly Burch ... or her full name Kelly Anne MacGregor
Burch...that's even funnier. She went through a time starting back in grade 4,
when she began signing her name Kelly MacBurch (which is where I got my email
name) and the teachers were phoning me asking what the heck was going on!
I'm so glad the girls are writing to each other Cindy. It's been a big thrill
for Kelly. She's having a blast with her own address and e-mailing anyone who
will write her back...including me! Both Kelley and Amber mean a great deal to
Kel through their correspondence, even though they've never met...but I can
understand that! :-)
ttyl, Nancy - Mom to Ryan 17 and Kelly 15 (pws)

Thanks Angela,
He is already up and running around like he never had it. I might sound
like a bad mom but I almost wish he would have a tonsilectomy, his apnea
scares me to death.
Of course I dont want the pain that he has after its over cause I hate that
part. Funny thing is when he had his reconstructive surgery he was up and
running around like it never happened. I cant imagine it, I had one surgery
and the thought of another scares me. Here my poor kid has had so many and
IM the chicken.
Renee

with all the stories velma tells us about her family, i thought everyone would
enjoy this..when i read it i thought of KK. LMAO
POTTY TRAINED
Have you ever asked your child a question too many times?
I hope you remember my story when they start getting frustrated. My
three-year-old son had a lot of problems with potty training; and I was
on
him constantly.
One day we stopped at Taco Bell for a quick lunch in between errands.
It was
very busy, with a full dining room. While enjoying my taco, I smelled
something funny, so of course I checked my seven-month-old daughter, and
she
was clean. Then realized that Matt had not asked to go potty in a
while, so
I asked him, and he said "No." I kept thinking, 'Oh Lord, that child
has had
an accident and I didn't have any clothes with me. Then I said, "Matt,
are
you sure you did not have an accident?"
"No," he replied.
I just knew that he must have had, cause the smell was getting worse. So
...
I asked one more time, "Matt, did you have an accident?"
This time, with a little smirk on his face, he jumped up, yanked down
his
pants, bent over and spread his cheeks and yelled.........See MOM, IT'S
JUST
GAS!!"
While 100 people nearly choked to death on their tacos, he calmly pulled
up
his pants and sat down to eat his food as if nothing happened. I was
mortified...
...But some kind elderly people made me feel a lot better, when they
came
over and thanked me for the best laugh they had ever had!

hey gloria....gloria.....do ya rememba.....gloria....gloria...
i sure have missed you girl!! i'm just now starting to read my e-mails for the
day. is jaylene not loosing any weight?? one thing that has worked for danny
is the flax seed meal and the sou lecithin granuals. he lost 20 pounds in
something like 3 months. conners dad peter was the one who told the one list
about it. it is located in the health food section at the groc. store.
proud to be dannys mom,
jeanie

From: "geejay" <geejay@...
Hi Veronica,
Thanks for your kind words and encouragement. This week I have been having a
low time. I am feeling so tired...........doctor appointment, therapy
appointments, food......food.......food on the mind all the time. How can I
get her to lose some weight thoughts comsuming my mind. It is a never ending
battle and struggle. It helps just to share these feelings with someone.
Thanks
p.s. I hope Jaylene starts showing some positive GH signs before the Feb
23/00 meeting or your Dr. Chamoine will go back to B.C. and tell you,........I
told you so.
Gloria