Watchit Joanne, he's just being a good PR man and a nice person, and that is probably why he is in a frontline position!!
Have faith in yourself.
Hugs
Ann
NZ
=========================================================================
Date: Sat, 22 May 1999
07:19:13 EDT
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From: BBarn60368@AOL.COM
Subject: Re: your last e-mail
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Joanne:
I just love and admire your honesty and openness! Where you are
coming from
is so normal, even for a lot of us who were not born with Apert!
The fact
that you acknowledge it, is admirable.
A suggestion about meeting single people. I know you said bars
and
approaching total strangers is out and that your church is mostly families.
How bout another church or at least another church's activities for
singles.
Our church has all kinds of activities for the singles, as well as
the
marrieds, elderly, single parents, etc. Some of the larger churches
would be
more likely to have what you are looking for and our church even has
a weekly
newsletter in the "lobby". In other words, access to the activities
without
having to talk or approach people, at first.
Or perhaps, talking to some of your patients, those you might feel
comfortable with, about their churches to see if they offer these types
of
programs. Good luck! I truly care about you and your happiness.
Also, I couldn't believe your words about the lack of pain. The
exact same
thing happened with me and my Shirley (almost 6). I took her
to the doctor
because she was cranky, had a fever, and had no appetite. She
had a severe
ear infection. The doctor even gave us a prescription for the
pain because,
" we would definitely be needing it". Shirley never mentioned
pain and we
never even used the pain meds. It is nice on the one hand that
the surgeries
are more bearable, but it does scare me that she can have a severe
ear
infection and I have no idea of the severity.
We still look forward to meeting you, when you get to Florida.
After we
both, " faint in the floor from meeting a total stranger", we can get
up and
deepen what has already started as a wonderful friendship!
Much love and may you always be aware of the presence of God in your
life!,
Alice in Orlando, Fl.
=========================================================================
Date: Sat, 22 May 1999
08:31:07 EDT
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From: GSieb91515@AOL.COM
Subject: Re: Hello! It's been a
long time!
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Janine--
Good luck with Emily's eye surgery tomorrow. Hope all goes well this time.
Brenda
=========================================================================
Date: Sat, 22 May 1999
08:31:05 EDT
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From: GSieb91515@AOL.COM
Subject: Re: Andrea
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Andrea--
Congratulations on your degree and good luck with your new endeavors
on
campus. You have chosen a wonderful career to pursue and I know
you will be
wonderful helping children. We wish you the best of luck
on the 27th and
will be praying for a speedy recovery.
Love,
The Sieberts
Houston
=========================================================================
Date: Sat, 22 May 1999
21:08:40 EDT
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From: AOL User <Munch35738@AOL.COM>
Subject: Re: latex allergies
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Colleen, there are many healthcare workers that are allergic to latex
gloves.
I was told it came from frequent exposures to latex. I
have seen one or two
patients that are allergic to latex. Most commonly found in healthcare
workers that I have seen. I hope that his chart is flagged for
this allergy.
MaryM ucp
=========================================================================
Date: Sat, 22 May 1999
21:13:09 EDT
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From: AOL User <Munch35738@AOL.COM>
Subject: Re: MRI & Cleft Palates
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Lisa,
Thanks for sharing that
news. It is sad that they did not realized
that she has a cleft palate. You are right to be angry for the
incident.
Mary
=========================================================================
Date: Sat, 22 May 1999
21:47:09 EDT
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From: AOL User <Munch35738@AOL.COM>
Subject: Stuff kids say and their advice
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Never trust a dog to watch your food.
>Patrick, Age 10
>When you want something expensive, ask your grandparents.
>Matthew, Age 12
>Never smart off to a teacher whose eyes and ears are twitching.
>Andrew, Age 9
>Wear a hat when feeding seagulls.
>Rocky, Age 9
>Sleep in your clothes so you'll be dressed in the morning.
>Stephanie, Age 8
>Never try to hide a piece of broccoli in a glass of milk.
>Rosemary, Age 7
>Don't flush the toilet when your dad's in the shower.
>Lamar, Age 10
>Never ask for anything that costs more than five dollars when
your parents
>are doing taxes.
>Carrol, Age 9
>Never bug a pregnant mom.
>Nicholas, Age 11
>Don't ever be too full for dessert.
>Kelly, Age 10
>When your dad is mad and asks you, "Do I look stupid?" don't
answer him.
>Heather, Age 16
>Never tell your mom her diet's not working.
>Michael, Age 14
>Don't pick on your sister when she's holding a baseball bat.
>Joel, Age 12
>When you get a bad grade in school, show it to your mom when
she's on the
>phone.
>Alyesha, Age 13
>Never try to baptize a cat.
>Laura, Age 13
>Never spit when on a roller coaster.
>Scott, Age 11
>Never do pranks at a police station.
>Sam, Age 10
>Beware of cafeteria food when it looks like it's moving.
>Rob, Age 10
>Never tell your little brother that you're not going to do
what your mom
>told you to do.
>Hank, Age 12
>Remember you're never too old to hold your father's hand.
>Molly, Age 11
>Listen to your brain. It has lots of information.
>Chelsey, Age 7
>Stay away from prunes.
>Randy, Age 9
>Never dare your little brother to paint the family car.
>Phillip, Age 13
>Forget the cake, go for the icing.
>Cynthia, Age 8
=========================================================================
Date: Sat, 22 May 1999
22:12:46 +0000
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From: "J. G. Lindamood"
<chanan8@JUNO.COM>
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Hello all!
It's me again. I am burning up with a fever (again) and have been
in bed
for the majority of the day. The antibiotics must not be working
very
well.
Your messages of encouragement and suggestions are all very appreciated.
I have taken into consideration some of your ideas already, but honestly,
too chicken to act upon them. Like the church idea, I've thought
about
trying a new larger church many times, but the comfortable feeling
I have
with my current one won't let me leave. I have been here before
twice in
my lifetime, coming to a point where it's time to move on, but like
the
comfortable surrounding too much to budge.
Hey Joni, where in Kentucky are you? I'm about an hour and a half
from
Cincinnati.
Back to bed, the walls are moving again.
Joanne
=========================================================================
Date: Sat, 22 May 1999
22:57:44 EDT
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From: AOL User <Munch35738@AOL.COM>
Subject: COKE
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[Unable to display image]
Uses for Coca-Cola
To clean a toilet bowl:
Pour a can of Coca-Cola into the toilet bowl. Let the
"real thing" sit for one hour, then brush and flush clean.
The citric acid in Coke removes stains from vitreous China.
To remove rust spots from chrome car bumpers:
Rub the bumper with a crumpled-up piece of Reynolds
Wrap aluminum foil dipped in Coca-Cola.
To clean corrosion from car battery terminals:
Pour a can of carbonated Coca-Cola over the terminals
to bubble away the corrosion.
To loosen a rusted bolt:
Applying a cloth soaked in a carbonated soda to the rusted
bolt for several minutes.
To bake a moist ham:
Empty a can of Coca-Cola into the baking pan, wrap the ham
in aluminum foil, and bake. Thirty minutes before the ham is
finished, remove the foil, allowing the drippings to
mix with the Coke for a sumptuous brown gravy.
To remove grease from clothes:
Empty a can of Coke into a load of greasy work clothes,
add detergent, and run through a regular wash cycle. The
Coca-Cola will help loosen grease stains.
It will also clean road haze from your windshield.
AND WE DRINK THIS STUFF!! LOL
=========================================================================
Date: Sun, 23 May 1999
17:05:45 EDT
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From: Yonstein@AOL.COM
Subject: Re: photo exchange
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Well, thank you for referring to my Emily as the precious little girl
with
blonde ringlets and glasses. YES, it's Emily. Ann, I know
I sent you a
picture. If you cannot find it, let me know and I will mail another.
It was
with a family picture also.
Keep the photos coming. I look for them in the mail everyday.
I LOVE
reading about the kids and seeing how beautiful they all are (and the
adults,
too.)
Janine
=========================================================================
Date: Sun, 23 May 1999
19:32:41 EDT
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From: Cristy Williams
<CARLEE0604@AOL.COM>
Subject: Re: Iam comming to Myrtle Beach
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Max,
I am so glad to hear you are coming to ;Myrtle Beach. I can't wait
to meet
you. I was wondering if you got the pictures of Carlee I mailed?
It has been
a few weeks back but I noticed you didn't mention getting her pictures.
Let
me know ok.
Cristy and Carlee
in Florida
=========================================================================
Date: Mon, 24 May 1999
14:14:35 +1200
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: Stuff kids say and their
advice
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Thanks for the laughs - both this and the COKE. One of the kids' sayings reminded me that I discovered Amy painting her grandparents' car when she was about 3-4yrs old. White paint on a little red Subaru. Fortunately her grandparents are very tolerant and just laughed (but was it a mite hysterical I wonder!) and Howard was able to clean it off without any problems.
Cheers
Ann
NZ
> >Never dare your little brother to paint the family car.
> >Phillip, Age 13
> >Forget the cake, go for the icing.
> >Cynthia, Age 8
>
>
=========================================================================
Date: Mon, 24 May 1999
14:14:37 +1200
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: photo exchange
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Thanks Janine, now I know I'm not losing my memory and I do have to keep looking. I'm sure it's in a safe place somewhere!
Getting my film off to the developers this week, hopefully something will be useful.
Keep those photos coming in folks!
Cheers
Ann
NZ
At 05:05 PM 23/05/99 EDT, you wrote:
>Well, thank you for referring to my Emily as the precious little girl
with
>blonde ringlets and glasses. YES, it's Emily. Ann, I know
I sent you a
>picture. If you cannot find it, let me know and I will mail
another. It was
>with a family picture also.
>
>Keep the photos coming. I look for them in the mail everyday.
I LOVE
>reading about the kids and seeing how beautiful they all are (and
the adults,
>too.)
>
>Janine
>
>
=========================================================================
Date: Sun, 23 May 1999
22:44:42 -0400
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From: Mechelle Holt
<MOM-POOH-of-2@WEBTV.NET>
Subject: surgery
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Thanks Marilyn! We can't wait to put the names with the faces!
This
beach trip couldn't have come at a better time, since we have another
bi-canthel advancement (cranial surgery) next month. We are going
to
give blood Friday for it.
Hopefully, this time I can give. Last time I was an emotional
wreck,
because my blood clotted before it got into the bag. However,
Tim gave
successfully. I felt like I had failed my child.
Maxine, it was great talking with you on the phone last night! :)
Mechelle
=========================================================================
Date: Mon, 24 May 1999
01:41:17 EDT
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From: Lisa Guyette
<LAM1126@AOL.COM>
Subject: Sunday
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Hi everyone,
Samantha had her televison debut Thurs. They had shot a segment
at the
Children's Cranial Facial potluck for a national Spanish station called
KMEX.
I have no idea what was being said, but she looked adorable and
I got to
tape it for her to see later.
I have been having such trouble finding hats for Samantha. She hates
the sun
in her eyes and I want to be able to protect her ears (which are set
low). I
usually just skip the hat part, but it's winding where I live as well
as
sunny. I had great luck this weekend. I went into a consignment
store and
they had a bag of hats that all fit her perfectly.
Samantha's first surgery is the same week as myrtle Beach trip, but
we would
love to join you all next year. Can't wait to hear about the
time you all
had.
We are taking Samantha to eye doctor this week. Her right eye
is going the
opposite of her left a lot. We found a doctor that works a lot
with easter
seal children. These kids go through so much.
Love, Lisa Guyette (mother of Samantha six months) who is feeling a
little
numb these days.
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Date: Mon, 24 May 1999
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From: Yonstein@AOL.COM
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Thanks to all for the wishes for Emily's surgery. She had her
surgery on
Friday. It was another hand surgery. The eye surgery is
off until July
because they couldn't coordinate after the last cancellation.
She's doing great, aside from the sleeping. That always goes out
of whack
afterwards, just when I need mine the most!!
Best wishes to Andrea on your surgery, I think the 27th. Our thoughts
and
prayers will be with you.
And to anyone else having surgery.
JOANNE; Hope you are feeling better.
Janine Krebs
=========================================================================
Date: Mon, 24 May 1999
11:20:04 -0700
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From: rreed <rreed@CABLEONE.NET>
Subject: Hi all!
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Hi Everybody, Max here! I just wanted to say that Iam sooooo excited
about
meeting everybody!
Judy my sister and I will be flying in at about 11:00 p.m. I know that
the
last time I wrote I didn't put 11:00 p.m. We have rented a car. So
that we
won't be waitting around for a shuttle, that late at night. So we'll
see you
all the next day. We'er going to try and get on the same floor as you
all.
No I didn't have a hard time talking my sister into it.It'll be a great
time
for both of us and a first time that since we were little that we will
be
doing something togather alone without the rest of our family.
Cristy Iam so sorry that
I missed you and thanking people for the
pictures. Yes I did get your picture of cute little Carlee and her
pretty
Mommy. Thank you very much. It looks like I'll be sending out pictures
in
June sometime. I'll be bring enough pictures to the get togather for
everyone to have one who wants one and I'll be sending out some soon
to the
rest of you.
Joanne, I hope you're feeling better. I know what you
mean about changing
churchs. My hubby want to do that too but I don't because I grew up
in this
church and it's where all my friends are. So I know where you're coming
from. I'll be praying for you and hope you can find a good friend.
In the
mean time you have alot of friends here in including me that will be
your
friend when you need one. You can even call me at (209) 524-2141 if
ever you
need someone who's been there. Iam a good listener.
Andera you're in my prayers for your up and coming surgery.
Hope all goes
the way you want it.
It was nice talking to you too Mechelle! If anyone want's
to call me and
just want to talk or ask my any questions that I'll be happy to answer
just
call me at (209)524-2141 at anytime. For you east coast people Im 3
hr.
behind you and you middle states Im two hr. behind. Well I gota go.
Cathie I
enjoyed talking to you too! Has Don put my story up on Teeter's page?I
guess
I'll have to look! Take Care all! I'll be praying for all who are having
surgery and who have been though it. Parent's take time out for yourselves
and get some rest. Your baby's will need you later.Happiness with lots
of
love Maxine or Max
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Date: Mon, 24 May 1999
17:22:55 EDT
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From: Liz Saylan <LSaylan@AOL.COM>
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Hello friends,
Sorry I have not emailed in a
long time. I want to thank those who
have sent me pictures, I will send out pictures as soon as I can get
some new
ones taken. I have been reading email, apologizes for not responding
sooner.
Hope everyone is doing ok? I will try to get better at responding to
emails,
keeping better in touch with all of you. I will also try to come into
chat on
sunday nights too.
Liz
=========================================================================
Date: Tue, 25 May 1999
07:14:40 +0000
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From: "J. G. Lindamood"
<chanan8@JUNO.COM>
Subject: Rough News
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Hello!
We are not calling it "bad news" and we are not calling it "good news"
because we don't know yet, however, I received some rough news at the
doctor's office yesterday. Temp was still over 100 @ 102 to be
exact. I
am still sluggish and tire easily. And to add to my symptoms,
my right
breast is sore and I have chronic diarrhea. So, the doctor pulled
some
blood and I am to provide a stool sample and she also performed a breast
exam. I have a lump on my right breast. She believes it's
a fiber cyst,
but as she said, she cannot be 100% sure just by touching. I
am off to
have my first mammogram! I am not worthy of all this fun in one
week!
We talked about the fact that if it is a fiber cyst, that would not
explain my feeling like crap feelings. So, that's why she pulled
the
blood and I get to go in a bucket to save my stool. There could
be a
million and three reasons why I feel like crap. Hopefully we
can pin
point the reason here soon.
Sorry for the frankness. At 7:00 A.M., I'm groggy and want to
get to the
point.
Joanne
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Date: Tue, 25 May 1999
08:07:37 -0400
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From: Joni Stephens
<athsteph@ACS.EKU.EDU>
Organization: Eastern Kentucky University
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Joanne:
I'm sorry you are sick again.
Hope you feel better soon.
I live about an hour and
a half from Cincinnati also. Richmond is just
25 minutes south of Lexington (the home of the UK Wildcats).
Where do
you live?
Joni
=========================================================================
Date: Tue, 25 May 1999
09:48:15 -0400
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From: Richard Thornquist
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> Joanne,
Here's hoping that you feel better real soon. I know what you
mean about
sticking with what feels comfortable, I'm the same way. I would
love to move
to a different state, but can't leave my family. My husband is
the same way.
Lynn
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Date: Tue, 25 May 1999
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From: Marilyn Williams
<Mbwill43@AOL.COM>
Subject: Re: Rough News
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DEAR JOANNE, I'LL BE PRAYING FOR GOOD RESULTS ON THE TEST. I KNOW HOW
SCARY
THESE TEST CAN BE I WENT THROUGH A BREAST BIOPSY A FEW MONTHS AGO AND
WAS
SCARED TO DEATH. BUT THANK GOD ALL WAS WELL. HOPE YOU GET TO FEELING
BETTER
SOON.AND THEY FIND OUT WHAT IS MAKING YOU FEEL LIKE CRAP. MARILYN
=========================================================================
Date: Tue, 25 May 1999
08:29:40 -0700
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From: "Scott Pengelly,
Ph.D." <scottp@EUGENEEZ.NET>
Subject: Good wishes/prayers, Joanne
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Dear Joanne:
You are in my thoughts and prayers. Hope you're feeling better soon.
All the best,
Scott
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Date: Tue, 25 May 1999
19:08:31 EDT
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From: BBarn60368@AOL.COM
Subject: Re: Rough News
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Joanne:
My prayers continue and so does my love.
Alice in Orlando, Fl.
=========================================================================
Date: Tue, 25 May 1999
17:38:46 -0700
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From: rreed <rreed@CABLEONE.NET>
Subject: Get well soon Joanne !
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Joanne, It sounds like you're going through the same thing that I went
through about 6 years ago. My doc. found a fiber cyst in my right breast
and
did a biopsy. They found a slow growing cancer. It was in a center
of a
mash.Iam not sure what the medical name for it is called but they were
able
to get it all out. It was the size of a pin needle. I had to take radiation
for about 4 mouths. Iam checked every year to be sure it's gone. I've
been
cancer free every since. Every now and then I get some lumps on my
breast
and I have them check out. My doc. says that the lumps are caused from
drinking to much caffeine. So now I drink caffeine-free everything.
Please
take care of your self. Iam praying for you. If you ever need to talk
to me,
call me at (209)524-2141) Take Care. Your friend Maxine or Max
=========================================================================
Date: Tue, 25 May 1999
18:07:28 -0700
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From: rreed <rreed@CABLEONE.NET>
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Hi Liz, I got your pictures of Jake and his daddy. I would liked to
have
seen his mommy and sister though!He's so cute. I'll be getting my pictures
it looks like out in June sometime. Thanks again for the pictures.
They'er
great. It looks like Jake enjoys being with his daddy!Take Care. Maxine
or
Max
=========================================================================
Date: Tue, 25 May 1999
20:21:56 -0500
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From: "Niemi, Liz"
<Liz.Niemi@NMB.NORWEST.COM>
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Thanks Max! Sorry about not sending a family picture. I
have a hard time
getting someone take our picture together. It's so hard to get
a 3 ½ and 1
½ year old to sit still for a picture with their parents!!
Now I know why
we only receive pictures of our friend's kids at Christmas time.
I'll try
to send some updated pictures to Don for Teeter's page. There
are some
older ones of myself and Jake's sister on there already if you're
interested.
Looking forward to getting you pictures!
Liz Niemi & Family
-----Original Message-----
From: rreed
[SMTP:rreed@CABLEONE.NET]
Sent: Tuesday,
May 25, 1999 8:07 PM
To:
APERT@LISTSERV.AOL.COM
Subject:
Hi Liz, I got your pictures
of Jake and his daddy. I would liked to
have
seen his mommy and sister
though!He's so cute. I'll be getting my
pictures
it looks like out in June
sometime. Thanks again for the pictures.
They'er
great. It looks like Jake
enjoys being with his daddy!Take Care.
Maxine or
Max
=========================================================================
Date: Wed, 26 May 1999
10:24:37 EDT
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From: Jenngram@AOL.COM
Subject: moving, catchin'up
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well, we made it from Tampa to Columbus.....what an ordeal.......after
loosing our furniture, finding it.....then heading to Kansas City for
graduation (Joe is officially a physician now...rather scarey if you
ask me,
don't tell him I said so) and back to Ohio, I have to wonder if there
is a
state i have not been throuhg in the past few weeks. Then yesterday,
I land
in the ER for stiches.....cut myself unpacking. The funny thing is
I have had
stiches 3 times in the last 5 years.....Seems I slice my hand every
time I
move. Its almost comical.
I am catching up on e-mails now, Congrats Lynn on FINALLY having that baby!!!!
I wanted to comment on how we tend to push our own needs aside from
time to
time. My mom went to the doctor yesterday, feeling "out of it". She
brought a
list of everything major thats been happening to her the past couple
of
years, thinking her problem may be stress. well, most of the items
were
related to my family....my scarey labor, Jordan and all his surgeries,
moving, new jobs, careers......etc......the doctor asked how I was
still
functioning without being medicated. A joke, but a topic my mom and
I focused
on quite a bit yesterday. I guess we all just rise to the challenge
of the
situation, without stopping to question how we are doing it. And until
we
wind up sick, or on the verge of a nervous breakdown no one else questions
it
either.
So I think its good for all of us to step back form time to time just
to
catch our breath. For me, Joe took Jordan to New Orleans for 10 days,
so I
could get things in order and have some time to myself.....something
I have
not had since 9-18-97. While it was hard....verrrrrrry hard to leave
them, it
was something everyone made me do for myself. And its turning out to
be a
very good thing...minus the fact that I play with sharp objects carelessly.
So when exhaustion prevails, or the nagging cold just won'y go away,
perhaps
this is our bodies way of telling us to just STOP and realize that
we too are
human and have needs. Something we all to often forget.
ok....I am off to find out whats been going on around here for the past
4
weeks!!!!
Jenn(Columbus, Ohio....formerly Tampa/St. Pete)
=========================================================================
Date: Wed, 26 May 1999
11:43:03 EDT
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From: Sheila MacDonald
<SMacdo1030@AOL.COM>
Subject: Re: BABY CONGRATS!!
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Way to Go Lynn !!!! I was so happy to hear that you had your baby
and that
you are doing well. I hope that I will get to see you, Andrew
and the baby
as soon as you are up to it.
I'll be talking to you soon,
Sheila
=========================================================================
Date: Wed, 26 May 1999
13:46:28 -0500
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From: "Niemi, Liz"
<Liz.Niemi@NMB.NORWEST.COM>
Subject: Father-In-Law
MIME-Version: 1.0
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Just wanted to let you know that my father-in-law, who has been in the
hospital the last four weeks, passed away this morning. They
removed his
feeding tube and IV tube yesterday. My husband was at his bedside
when he
passed. I am leaving today and will be away from my e-mail for
awhile.
Thanks in advance for all your well wishes and prayers.
He was a peaceful man, and died in the same manner.
Thanks again,
Liz Niemi & Family
=========================================================================
Date: Wed, 26 May 1999
18:05:20 EDT
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From: Jenngram@AOL.COM
Subject: Re: Father-In-Law
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Liz,
I am sorry to hear of your families loss. I am glad to hear that your
father-in-law passed peacefully. That is perhaps the greatest gift
we can be
given when its our time to go.
You and your family are in my thoughts and prayers
Jenn(Columbus, Ohio)
=========================================================================
Date: Thu, 27 May 1999
01:08:39 +0300
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From: "Xanthi D. Apostolidou"
<apostolidou@FREEMAIL.GR>
Subject: Hello again. We are finally
back!
MIME-Version: 1.0
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Hi everyone!
Sorry for not writing for such a long time, but loads of things happened
=
these past weeks and made us stay offline.=20
We had to go to Athens for some days to have Helen Raphaela examined.
We =
met some doctors. Among them we met a plastic surgeon (for the hands)
=
who told us that our baby will probably have 2 or 3 fingers in each
=
hand.To tell you the truth, although we were disappointed by the things
=
he told us, still we hope for something much better. We are probably
=
visiting Boston in the near future to re-evaluate the extense of the
=
problem. The midface advancement will be held in Athens.=20
Raphaela has a great difficulty in breathing. Sometimes we get to be
so =
intimidated because she is struggling to get some air (we have noticed
=
that she has sleep apne),so we constantly stand by her in turns.=20
Hardly does she close her eyes while she is sleeping and that's bad.
=
However, we think that this will be much improved after the surgery.
=
This is the way it works ,isn't it?
We just noticed that one toe- nail is growing under the skin.
We'd like to ask you about the cost of the surgeries, so as to estimate
=
our expenses in advance. The big disadvantage is that we will have
to =
travel a long way every time, in order to reach our destination, that
is =
the center in which Raphaela will undergo the surgeries. That is the
=
most worrying thing of all. We reckon that this will make it much more
=
difficult & tiring for the baby ( she is now 1 month and 12 days
old).=20
Thank you all for the warth that you provided us. It's so nice to know
=
that there are friends out there to support you and share their =
thoughts, their happy moments and fears with you. Even now after about
a =
month and a half we are not so sure whether we are acting correctly
or =
not. We try to eliminate everything that has to do with stupid =
narrow-minded comments by turning a deaf ear to it. We try to remain
=
calm and brave and focus on the our baby's need. But it's quite hard
=
sometimes...
Due to our long absense there is a huge pile of e-mails we have to read
=
so as to catch up with you.=20
Good luck to each of you who is going to have a surgery. All of you
are =
in our prayers.=20
Love,=20
Raphaela's family-Tereza(mom)=20
Xanthi& Marianna (aunts)
------=_NextPart_000_01A6_01BEA7DD.749538A0
Content-Type: text/html;
charset="iso-8859-7"
Content-Transfer-Encoding: quoted-printable
<!DOCTYPE HTML PUBLIC "-//W3C//DTD HTML 4.0 Transitional//EN">
<HTML><HEAD>
<META content=3D"text/html; charset=3Diso-8859-7" =
http-equiv=3DContent-Type>
<META content=3D"MSHTML 5.00.2014.210" name=3DGENERATOR>
<STYLE></STYLE>
</HEAD>
<BODY bgColor=3D#ffffff>
<DIV><FONT size=3D2>Hi everyone!</FONT></DIV>
<DIV> </DIV>
<DIV><FONT size=3D2>Sorry for not writing for such a long time,
but =
loads of=20
things happened these past weeks and made us stay offline.
=
</FONT></DIV>
<DIV> </DIV>
<DIV><FONT size=3D2>We had to go to Athens for some days to have
Helen =
Raphaela=20
examined. We met some doctors. Among them we met a plastic
surgeon =
(for the=20
hands) who told us that our baby will probably have 2 or 3 fingers
in =
each=20
hand.To tell you the truth, although we were disappointed by the things
=
he told=20
us, still we hope for something much better. We are probably
=
visiting=20
Boston in the near future to re-evaluate the extense of the problem.
The =
midface=20
advancement will be held in Athens. </FONT></DIV>
<DIV> </DIV>
<DIV><FONT size=3D2>Raphaela has a great difficulty in breathing.
=
Sometimes we get=20
to be so intimidated because she is struggling to get some air (we
have =
noticed=20
that she has sleep apne),so we constantly stand by her in turns. =
</FONT></DIV>
<DIV><FONT size=3D2>Hardly does she close her eyes while she
is sleeping =
and=20
that's bad. However, we think that this will be much improved after
the =
surgery.=20
This is the way it works ,isn't it?</FONT></DIV>
<DIV> </DIV>
<DIV><FONT size=3D2>We just noticed that one toe- nail is growing
under =
the=20
skin.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT size=3D2>We'd like to ask you about the cost of the
=
surgeries, so as to=20
estimate our expenses in advance. The big disadvantage is that we will
=
have to=20
travel a long way every time, in order to reach our destination, that
is =
the=20
center in which Raphaela will undergo the surgeries. That
is the =
most=20
worrying thing of all. We reckon that this will make it much more =
difficult=20
& tiring for the baby ( she is now 1 month and 12 days old).
=
</FONT></DIV>
<DIV> </DIV>
<DIV><FONT size=3D2>Thank you all for the warth that you provided
us. =
It's so nice=20
to know that there are friends out there to support you and share their=20
thoughts, their happy moments and fears with you. Even now after about
a =
month=20
and a half we are not so sure whether we =
are acting correctly or=20
not. We try to eliminate everything that has to do with stupid=20
narrow-minded comments by turning a deaf ear to it. We try to remain
=
calm and=20
brave and focus on the our baby's need. But it's quite hard=20
sometimes...</FONT></DIV>
<DIV> </DIV>
<DIV>
<DIV><FONT size=3D2>Due to our long absense there is a huge pile
of =
e-mails we=20
have to read so as to catch up with you. </FONT></DIV>
<DIV> </DIV></DIV>
<DIV><FONT size=3D2>Good luck to each of you who is
going to have a =
surgery. All of you are in our prayers. </FONT></DIV>
<DIV> </DIV>
<DIV><FONT size=3D2>Love, </FONT></DIV>
<DIV><FONT size=3D2>Raphaela's family</FONT><FONT size=3D2>-Tereza(mom)=20
</FONT></DIV>
<DIV><FONT size=3D2>Xanthi& Marianna =
(aunts)</FONT></DIV></BODY></HTML>
------=_NextPart_000_01A6_01BEA7DD.749538A0--
=========================================================================
Date: Wed, 26 May 1999
18:39:37 EDT
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From: Copperhd87@AOL.COM
Subject: More rough news
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Joanne and all,
We had rough news this last week also. Sorry to hear you did
also.
At Mitchell's routine craniofacial clinic, the MRI revealed a spot on
his
brain that the neurosurgeons are not comfortable with. As with
you, we don't
know what it is--it could be nothing or it could be life threatening.
This
is the first MRI Mitchell has had, so there is no base line to compare
it to.
The suggested course of action is to take another MRI in three months
to see
if there is any change. Has anyone had any experience with this
before? Is
this the best course of action? Should we go see another doctor
for a second
opinion at this point or should we wait? Tell me what to do,
please.
THanks,
Resa
=========================================================================
Date: Wed, 26 May 1999
19:23:47 EDT
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From: Jenngram@AOL.COM
Subject: Re: More rough news
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I don't know about anyone else, but I would be asking, until its answered,
what they THINK, it may be and if they are not comfortable with it
WHY wait 3
mos to do a repeat. And, I would keep asking and going to doctors until
someone finally sits down and explains whats going on, and what they,
as
doctors, are thinking. Keep asking until you get answers you are satisfied
with.
Jenn
=========================================================================
Date: Thu, 27 May 1999
11:46:21 +1200
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: moving, catchin'up
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Hi Jenn
Congratulations on your successful move. Sounds like you've had a fun time :-~
>in the ER for stiches.....cut myself unpacking. The funny thing is
I have had
>stiches 3 times in the last 5 years.....Seems I slice my hand every
time I
>move. Its almost comical.
Yeah, well, sometimes some people just don't get the message the first time, so they just have to be given it again and again until they do! Sounds like you finally got it. Good on you for taking time for yourself at last. Just don't leave it so long in the future or next time the wounds may not be so minor.
I finally got the message when I poured a pot of boiling water down my leg.
Take care and good luck in your new home.
Hugs
Ann
NZ
=========================================================================
Date: Wed, 26 May 1999
20:27:37 EDT
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From: Marilyn Williams
<Mbwill43@AOL.COM>
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HI LIZ, THANKS SO MUCH FOR THE PICTURE OF JAKE AND IS DAD. HE SURE HAS
GROWN
SINCE THE SHOW. CRISTY SHOWED IT TO ME WHEN SHE GOT IT . TAKE CARE
AND THANKS
AGAIN. MARILYN
=========================================================================
Date: Wed, 26 May 1999
20:38:29 -0500
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From: Randy & Deb
Picht <rldpicht@INFO.STARPOINT.NET>
Subject: Re: Father-In-Law
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Liz,
I am sorry to hear about your father-in-law. Our condolences are
with you
and your family.
The Picht's
-----Original Message-----
From: Niemi, Liz <Liz.Niemi@NMB.NORWEST.COM>
To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM>
Date: Wednesday, May 26, 1999 2:54 PM
Subject: Father-In-Law
>Just wanted to let you know that my father-in-law, who has been in
the
>hospital the last four weeks, passed away this morning. They
removed his
>feeding tube and IV tube yesterday. My husband was at his bedside
when he
>passed. I am leaving today and will be away from my e-mail for
awhile.
>Thanks in advance for all your well wishes and prayers.
>
>He was a peaceful man, and died in the same manner.
>
>Thanks again,
>
>Liz Niemi & Family
>
=========================================================================
Date: Wed, 26 May 1999
23:06:38 EDT
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From: Sheila MacDonald
<SMacdo1030@AOL.COM>
Subject: Re: Father-In-Law
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Dear Liz,
Our sincere thoughts and prayers are with you at this time. It
is one of the
hardest things to go through in losing a parent. I am sure that
you felt he
was as close as a father the same way I feel about my father-in-law.
Wish
your family well for us.
God Bless,
Sheila MacDonald (Paige's Mom)
=========================================================================
Date: Wed, 26 May 1999
23:31:28 EDT
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From: Sheila MacDonald
<SMacdo1030@AOL.COM>
Subject: Re: Hello again. We are finally
back!
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Hi Tereza,
First I would like to welcome you to the apert family. I've had
a very busy
month with doctor's appointments and surgeries so I am just starting
to catch
up on the new things that has been happening. My name is Sheila
and I have a
daughter with apert syndrome named Paige who is 4 years old.
I would just like to tell you that when Paige was first born we also
got a
first opinion of the hand telling us that they would only be able to
get
between 2-3 fingers out of each hand. This is a hard thing to
hear...but, I
got a second opinion and I am happy to say that Paige has 4 beautiful
fingers.....no thanks to the other Doctor. I since have gone
to a third
doctor and he has performed his first surgery on her hands that is
beyond
anything the second doctor has done. What I'm getting at is that
it would be
in your daughter best interest to scout out as many doctor that you
can until
you come across one that you feel would do the best job.
Paige is also going in for a sleep study to determine whether or not
she has
sleep apnea...this is a common thing among these children.....but,
there is
hope....find out if she could have surgery to remove her adenoids or
tonsils...these are things that could be obstructing her breathing
during
sleep.
I wish you the best.....Just remember that you have been given a gift....I
thank God every day for Paige...she has brought more meaning into our
lives
than anything I could imagine.
Take Care,
Sheila
=========================================================================
Date: Thu, 27 May 1999
00:57:07 -0400
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Comments: RFC822 error: <W> Incorrect or
incomplete address field found and
ignored.
From: Andrea Gartner
<agartner@PEGANET.NET>
Subject: On my way
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Hi everyone,
Well, the time has come. In 2 hours I'll be on my way to Miami.
The =
surgery will start at 7:30. They are going to make the eyes look
=
average and move them closer together, and heighten my nose, and round
=
off the upper side of my face.
Thank you all for keeping me in your prayers. Joanne, I hope things
get =
better for you. I agree with what you said Jenn!
I hope Mitchell's =
spot on the brain isn't serious. Liz, sorry to hear about your
father =
in law.
I'll be looking forward to reading e-mails when I get back! :>) =20
Take care,
Andrea
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<DIV><FONT color=3D#000000 size=3D2>Hi everyone,</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT color=3D#000000 size=3D2>Well, the time has come.
In 2 =
hours I'll=20
be on my way to Miami. The surgery will start at 7:30.
They =
are=20
going to make the eyes look average and move them closer together,
and =
heighten=20
my nose, and round off the upper side of my face.</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT color=3D#000000 size=3D2>Thank you all for keeping
me in your =
prayers. Joanne, I hope things get better for you.
I =
agree=20
with what you said Jenn! I hope Mitchell's
spot on the =
brain=20
isn't serious. Liz, sorry to hear about your father in =
law.</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT color=3D#000000 size=3D2>I'll be looking forward to
reading =
e-mails when=20
I get back! :>) </FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT color=3D#000000 size=3D2>Take care,</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2>Andrea</FONT></DIV></BODY></HTML>
------=_NextPart_000_002A_01BEA7DB.D7D9BC80--
=========================================================================
Date: Thu, 27 May 1999
08:06:18 -0400
Reply-To: Information exchange and Internet
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Sender: Information exchange and
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and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Joni Stephens
<athsteph@ACS.EKU.EDU>
Organization: Eastern Kentucky University
Subject: Re: Hello again. We are finally
back!
MIME-version: 1.0
Content-type: text/plain; charset=us-ascii
Content-transfer-encoding: 7bit
Tereza and Aunts:
Hi. Your comments
brought back memories of the many disheartening
things we were told by doctors when Joseph was very young. It
seemed
like every time we went to a doctor, it was bad or discouraging news.
If you are going to Boston, Dr. Joseph Upton is the doctor you need
to
see about Helen Raphaela's hands. He is wonderful and has worked
with
many Apert children. Although he did not do my Joseph's hands,
we went
to him for a second opinion concerning the hand surgery, and I was
very
impressed.
My Joseph also had extreme
difficulty breathing. He underwent many
palatal/throat surgeries as the doctors tried to improve his airway
and
keep from giving him a trach. He ended up having to have the
trach
anyway, and it has made such a drastic improvement in his growth.
If I
had it to do all over again, we would have done the trach sooner and
not
had all the other throat surgeries. (But hindsight is always 20/20!)
Just remember, as you progress
through the many surgeries and
revelations concerning Helen Raphaela's syndrome, there is a light
at
the end of the tunnel - it does get better. My doctors kept telling
me
that by the time Joseph was six, most of the surgeries and problems
would be behind us. They were right. We have gone from
having a
surgery every 2-3 months, to just 1 this past year (on his foot).
Joseph just graduated from kindergarten and will be going into first
grade next year. His major problem in school is his fine motor
skills
(working with his hands), but they are adapting his work through use
of
a computer, a scanner, and a touch screen. Thank goodness we
are in the
age of computers!!
Well, I have got to get to
work. I'm thinking about you and your
daughter; when you have to make decisions concerning her surgeries,
get
as much information as you can, then trust your instincts and your
love
for Helen Raphaela. Always remember that no one knows your daughter
better than you. You'll make the right decisions for her.
Joni
Mom of Joseph, 6
=========================================================================
Date: Thu, 27 May 1999
08:08:30 -0400
Reply-To: Information exchange and Internet
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From: Joni Stephens
<athsteph@ACS.EKU.EDU>
Organization: Eastern Kentucky University
Subject: Re: More rough news
MIME-version: 1.0
Content-type: text/plain; charset=us-ascii
Content-transfer-encoding: 7bit
Copperhd87@AOL.COM wrote:
>
> Joanne and all,
> We had rough news this last week also. Sorry to hear you did
also.
>
> At Mitchell's routine craniofacial clinic, the MRI revealed a spot
on his
> brain that the neurosurgeons are not comfortable with. As with
you, we don't
> know what it is--it could be nothing or it could be life threatening.
This
> is the first MRI Mitchell has had, so there is no base line to compare
it to.
>
> The suggested course of action is to take another MRI in three months
to see
> if there is any change. Has anyone had any experience with
this before? Is
> this the best course of action? Should we go see another doctor
for a second
> opinion at this point or should we wait? Tell me what to do,
please.
> THanks,
> Resa
Resa:
I agree with Jenn.
Keep asking questions until you are satisfied with
what is being done.
Joni
Mom of Joseph, 6
=========================================================================
Date: Thu, 27 May 1999
08:20:59 -0400
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From: Joni Stephens
<athsteph@ACS.EKU.EDU>
Organization: Eastern Kentucky University
Subject: Re: Father-In-Law
MIME-version: 1.0
Content-type: text/plain; charset=us-ascii
Content-transfer-encoding: 7bit
Liz:
Thinking about you and your
family. I am praying that the Lord will
give you strength and comfort in this time of sorrow and loss.
Joni
=========================================================================
Date: Thu, 27 May 1999
08:04:33 -0500
Reply-To: Information exchange and Internet
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From: "Horning, Bob
D (MN14)" <Horning_Bob@HTC.HONEYWELL.COM>
Subject: Acne (?) in the scalp
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Hi everyone.
Krista has been having a lot of trouble with little zits all over her
scalp.
Some areas are itchy, others are not. Acne is supposed to be
common with
Aperts and Krista is now almost 12, so it's not too surprising to see
this
showing up. However, her face doesn't seem to be having a lot
of problems
yet. We've been to a couple dermatologists with no success and
with a fair
amount of frustration. They don't seem willing to give us much
information
or advice other than, "Here, take this sample of xxxx." Have
any of you had
or seen this? Found anything that kept it under control?
Thanks.
Bob Horning
=========================================================================
Date: Thu, 27 May 1999
09:31:29 EDT
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From: Jenngram@AOL.COM
Subject: Re: On my way
MIME-Version: 1.0
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Best of Luck Andrea.....I admire your strength and courage, as this
is never
an easy decision. I know you will pleased with th reslts!!!! Let us
know how
it went!!!
Jenn
=========================================================================
Date: Thu, 27 May 1999
10:46:15 -0500
Reply-To: Information exchange and Internet
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From: Carbide Tech
<ruth@CARBIDETECH.COM>
Subject: Re: Acne (?) in the scalp
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit
Hi Guys,
Sorry I had not written in awhile, but I have been reading all of your
e-mails...I have been so busy ...as most of you know ...we are getting
ready to celebrate Kris Quinceanera...for those of you who don't know
what
it is..It is BIG deal...A traditional Spanish Custom to celebrate
a young
womans life...Actually Kris will be 16 in July...but since she had
a
surgery last year we postponed it for this year. It is on Saturday
, June
5...She is sooooo excited!!!!
To Andrea...I will keep you in my prayers....Trust in God...He is always
there...
It brings chills to hear how someone died "peacefully"..isn't that
awesome.? I send my condolences to the family...
To Bob Horning (re: Krista) Kris has for her whole life
dealt with scalp
problems...Her Drs. have said its "cradle cap"...I know ..at 15 she
still
has baby cradle cap...but yes....The only thing that works for Kris...It
does not take it away completely...it helps for about 2 weeks..and
then you
have to re-"soak" her scalp again..is Mineral Oil...Just soak her head
with
it and let it stand ..massaging her scalp with it...for about 5-10
min. and
then wash with MILD shampoo...
Kris is scheduled to have her mid-face. Leforte III (?) done in July...We
decided not to go with the RED System...Kris would not even talk about
it...We saw a baby with it...And to me the baby looked real
good..considering....but to Kris it was so painful...despite the fact
that
Mom and baby kept telling her.. he was not in pain....It was scary
for
Kris...she would shudder and shake just looking at the baby....We asked
her
Dr. what we would do if the RED was not available...and he said the
"old
fashioned way"...So we decided let's do it....I am praying that this
will
be her last majpr surgery...after 29....I think its time to say "No
Mas, No
mas"....We also have decided not to do her feet..after 6 opinions....its
best to leave them alone....
Sorry it was so long!!
To everyone that is dealing with "life" circurstances...My prayers
are
with you...
Adios mis amigos!
Ruth Contreras (mother to Kris, 15...going on 16 y/o- on July 2!)
----------
> From: Horning, Bob D (MN14) <Horning_Bob@HTC.HONEYWELL.COM>
> To: APERT@LISTSERV.AOL.COM
> Subject: Acne (?) in the scalp
> Date: Thursday, May 27, 1999 8:04 AM
>
> Hi everyone.
>
> Krista has been having a lot of trouble with little zits all over
her
scalp.
> Some areas are itchy, others are not. Acne is supposed to be
common with
> Aperts and Krista is now almost 12, so it's not too surprising to
see
this
> showing up. However, her face doesn't seem to be having a lot
of
problems
> yet. We've been to a couple dermatologists with no success
and with a
fair
> amount of frustration. They don't seem willing to give us much
information
> or advice other than, "Here, take this sample of xxxx." Have
any of you
had
> or seen this? Found anything that kept it under control?
Thanks.
>
> Bob Horning
=========================================================================
Date: Thu, 27 May 1999
12:12:00 -0400
Reply-To: Information exchange and Internet
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and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Don Sears <dsears@SCRS.STATE.SC.US>
Subject: Re: Assistance Request
Comments: To: "edward@ngtvoice.com" <edward@ngtvoice.com>
MIME-Version: 1.0
Content-Type: text/plain
Hi Ed -
Teeter's hands are not involved very severely compared to some Apert
kids' hands, so there may not be an across the board solution or even
best guess. Every kid is different. She uses a standard
101 key
keyboard and plain vanilla mouse, which gets replaced regularly due
to
her tendency to eat while playing on the computer! I wish I had
a great
answer for you. Our best general advice has always been to do
everything as normally as possible, and the kids will adapt...
Thanks for the compliments, and I will put the question out on our
listserv to see if anyone else has any recommendations.
Don.
> I am a technology specialist who has been asked to recommend a
> keyboard and
> mouse for a 2nd grader with Aperts. I haven't met him yet,
but
> understand
> that he has limited use of his hands at this time. Are you
familiar
> with
> any keyboards/mice/pointers that others have used with success?
> Thanks for
> your assistance and congratulations on your terrific website....Ed.
> Rosenthal, President, Next Generation Technologies, Inc.
> http://www.ngtvoice.com
=========================================================================
Date: Thu, 27 May 1999
12:58:43 EDT
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Sender: Information exchange and
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From: Cristy Williams
<CARLEE0604@AOL.COM>
Subject: Re: Father-In-Law
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Liz,
Sorry to hear that your FatherinLaw passed away. But we all know
he is in
good hands now. I hope you guys are handling it as well as to
be expected.
Thoughts and Prayers,
Cristy
=========================================================================
Date: Thu, 27 May 1999
13:07:32 EDT
Reply-To: Information exchange and Internet
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From: Cristy Williams
<CARLEE0604@AOL.COM>
Subject: Re: On my way
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
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Andrea,
I hope everything goes great with your mid-face op. I will keep you
in my
thoughts and prayers. I am looking forward to getting your pictures
also. I
think it was nice for you to get on the net at 5:00AM to let us know
that you
were on your way. Thanks! Please let us know how you are doing
as soon as
you are feeling better.
Love,
Cristy and Carlee
in Florida
=========================================================================
Date: Thu, 27 May 1999
13:34:04 EDT
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Sender: Information exchange and
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From: Sheila MacDonald
<SMacdo1030@AOL.COM>
Subject: Re: On my way
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
We wish you the best of luck in your surgery Andrea....I am looking
forward
to hearing all about it when you get back!!!!
Good luck
Sheila (paige's mom)
=========================================================================
Date: Thu, 27 May 1999
14:10:36 EDT
Reply-To: Information exchange and Internet
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From: AOL User <Munch35738@AOL.COM>
Subject: Re: Father-In-Law
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Liz,
Sorry to here about your
father-in-law. My thoughts are with you and
your family. Mary
=========================================================================
Date: Thu, 27 May 1999
11:20:28 -0700
Reply-To: Information exchange and Internet
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From: Joseph Chan <jchan7@PACBELL.NET>
Subject: Educational Software
MIME-Version: 1.0
Content-Type: multipart/alternative;
boundary="----=_NextPart_000_001F_01BEA832.ECE4C780"
This is a multi-part message in MIME format.
------=_NextPart_000_001F_01BEA832.ECE4C780
Content-Type: text/plain;
charset="Windows-1252"
Content-Transfer-Encoding: quoted-printable
Hi All!
We are in the process of writing yet another
IEP. I am wondering=20
if anyone knows of any new interesting educational software on the=20
market that we can add to Roxy's (4th grade) program. We have
Reader =
Rabbit, Jumpstart, and Cluefinders software already. =20
Thanks!
Rose
------=_NextPart_000_001F_01BEA832.ECE4C780
Content-Type: text/html;
charset="Windows-1252"
Content-Transfer-Encoding: quoted-printable
<!DOCTYPE HTML PUBLIC "-//W3C//DTD HTML 4.0 Transitional//EN">
<HTML><HEAD>
<META content=3D"text/html; charset=3Dwindows-1252" =
http-equiv=3DContent-Type>
<META content=3D"MSHTML 5.00.2014.210" name=3DGENERATOR>
<STYLE></STYLE>
</HEAD>
<BODY bgColor=3D#ffffff>
<DIV>Hi All!</DIV>
<DIV> We are in the process
of writing yet =
another=20
IEP. I am wondering </DIV>
<DIV>if anyone knows of any new interesting educational software
on the =
</DIV>
<DIV>market that we can add to Roxy's (4th grade) program.
We have =
Reader=20
Rabbit, Jumpstart, and Cluefinders software already. </DIV>
<DIV> </DIV>
<DIV>Thanks!</DIV>
<DIV>Rose</DIV></BODY></HTML>
------=_NextPart_000_001F_01BEA832.ECE4C780--
=========================================================================
Date: Fri, 28 May 1999
14:27:19 +1200
Reply-To: Information exchange and Internet
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Sender: Information exchange and
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and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Operation Smile
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
For those of you who tried to follow up the Operation Smiles information I sent out recently, the email address was incorrectly printed in the newsletter. AboutFace have just sent me the correct address (well, I haven't tried it yet so I hope it is correct!).
eisermanw@aol.com
Regards
Ann
NZ
=========================================================================
Date: Fri, 28 May 1999
14:27:24 +1200
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: Assistance Request
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Don, Ed wouldn't like my response. I have insisted that Amy learn to write - not that I have needed to insist, anything else was never seriously considered. We have a computer at home which Amy uses when she feels like it, which is rarely. She is on the list for assessment for a computer, but the list is usually 6 months or more long and she is now over 8 years old. We aren't worried, she will realise the advantages of the computer when she is ready and in the meantime she can still "create" when we are away at our holiday home where there is no electricity.
We use a standard Microsoft mouse and she manages fine with that.
I do realise that high school or university will require computer-expertise.
Regards
Ann
NZ - the home of the "do-it-yourselfers"
=========================================================================
Date: Fri, 28 May 1999
14:27:26 +1200
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Photo Exchange
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
I have just spent a very pleasant half hour updating our photo album with all the new photos - many thanks to the Baileys for those gorgeous photos of Jacob, and YES I have found curly-top Emily Krebs (I'm envious, Amy has inherited my fine straight hair!)
It is great to be able to insert these new photos beside the ones received last year and see how well the children are all doing.
There's plenty of space for more!
Regards
Ann
NZ
=========================================================================
Date: Fri, 28 May 1999
07:33:02 EDT
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From: TFinch10@AOL.COM
Subject: Re: keyboards and software
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
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Hi all,
A few thoughts on keyboards and computers. Nate writes fine but as
schoolwork
demands increase, he will go to keyboard. He enters third grade in
the fall
and the expectations for "production" jump. He'll be using an
Alphasmart--portable keyboarding unit-- which our school supplies.
His fine
motor is not bad but other kids might want to look into adapative keyboards
with larger keys. Living on Route 128 in Boston, we are in the heart
of high
tech and lots of the parents in our town work in some related area.
For Roxy,
depending on her learning issues, you might try checking the
internet---www.ldresources.com--has internet resources for those with
learning disabilities. You can also try--www.cast.org--for computer-based
resources. LOTS of software is available free on the net. I've got
a list of
many more, depending on the particular issues.
Anyway--that's it for the moment. Nate is 8 now and playing Little
League.
We're searching for ways to make it easier for him to hold the baseball
bat--ie pine tar? or using soccer goalie gloves. There are times when
I still
can't believe that he can see the ball--but somehow he does! Good luck
to
Andrea and Kris with surgeris--Jeanne in Boston
=========================================================================
Date: Fri, 28 May 1999
08:54:04 -0400
Reply-To: Information exchange and Internet
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Sender: Information exchange and
Internet safe haven for Apert Syndrome
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From: Joni Stephens
<athsteph@ACS.EKU.EDU>
Organization: Eastern Kentucky University
Subject: Re: keyboards and software
MIME-version: 1.0
Content-type: text/plain; charset=us-ascii
Content-transfer-encoding: 7bit
TFinch10@AOL.COM wrote:
>
> Hi all,
> A few thoughts on keyboards and computers. Nate writes fine but as
schoolwork
> demands increase, he will go to keyboard. He enters third grade in
the fall
> and the expectations for "production" jump. He'll be using an
> Alphasmart--portable keyboarding unit-- which our school supplies.
His fine
> motor is not bad but other kids might want to look into adapative
keyboards
> with larger keys. Living on Route 128 in Boston, we are in the heart
of high
> tech and lots of the parents in our town work in some related area.
For Roxy,
> depending on her learning issues, you might try checking the
> internet---www.ldresources.com--has internet resources for those
with
> learning disabilities. You can also try--www.cast.org--for computer-based
> resources. LOTS of software is available free on the net. I've got
a list of
> many more, depending on the particular issues.
> Anyway--that's it for the moment. Nate is 8 now and playing Little
League.
> We're searching for ways to make it easier for him to hold the baseball
> bat--ie pine tar? or using soccer goalie gloves. There are times
when I still
> can't believe that he can see the ball--but somehow he does! Good
luck to
> Andrea and Kris with surgeris--Jeanne in Boston
Jeanne:
Joseph has just started
to play T-ball, and he has the same problem,
holding on to the bat. I bought two baseball gloves, cut them
down to
his size (leaving the fingertips open), cut and re-shaped them to fit
his hands (he has five fingers on one hand and four on the other),
and
that has helped tremendously. We also have considered using the
"tacky"
spray on the gloves - it helps maintain a better grip. Good luck
to
Nate!
Joni Stephens
Mom of Joseph, 6
=========================================================================
Date: Fri, 28 May 1999
09:07:05 EDT
Reply-To: Information exchange and Internet
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Internet safe haven for Apert Syndrome
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From: Jenngram@AOL.COM
Subject: Re: Assistance Request
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
I, like Ann have insisted that Jordan be taught to write and use pencils,
pens, (but mostly crayons) at this point. His OT didn't want to focus
on it
saying that he could use adaptave equipment, but I felt this was
unaccecptable. So even at 18 mos. he can hold a color quite well, and
we use
sidewalk chalk for our afternoons of creavity. AND...at 18 mos. he
can use a
standard mouse and manuever a computer far better than I would like.
If
backup disk were not a necessity before, they CERTAINLY are now!!!
I also wanted to send a big thank you to everyone who sent us pictures
of
their cuties, even though we were not on the list due to our move.
As soon as
I can get things in order I will send ya'll one of Jordan. But, he
has some
new pics that Don put on his site on Teeters page....Actually they
are almost
a year old now, but more recent than the last batch I sent out!!!!
Jenn
=========================================================================
Date: Fri, 28 May 1999
09:14:40 -0400
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
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Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Joni Stephens
<athsteph@ACS.EKU.EDU>
Organization: Eastern Kentucky University
Subject: Photo Exchange
MIME-version: 1.0
Content-type: text/plain; charset=us-ascii
Content-transfer-encoding: 7bit
Hi! I have only been on the listserv for a short time, and I was
wondering how I can get on the photo exchange. I would love to
be able
to associate a face with the names that I see everyday, and I would
really love for all of you to meet Joseph. If I had known about
the
Myrtle Beach trip sooner, I would have tried to schedule that for our
summer. But we have already made our summer plans for this year.
Maybe
next year.
Thanks!
Joni
=========================================================================
Date: Fri, 28 May 1999
13:22:45 +0000
Reply-To: Information exchange and Internet
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Internet safe haven for Apert Syndrome
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Comments: Authenticated sender is <jgibson2@POP.erols.com>
From: jgibson2@EROLS.COM
Subject: Re: Educational Software
In-Reply-To: <002a01bea87e$b1453100$9ebdd6cf@home>
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> We are in the process of writing yet
another IEP. I am wondering
> if anyone knows of any new interesting educational software on the
> market that we can add to Roxy's (4th grade) program. We have
Reader Rabbit, Jumpstart, and
Cluefinders software already.
What about Math Blasters? It comes in a variety of skill
levels,
so you can pick the one appropriate for her. It's not new, but
it's
always being upgraded.
Judy
=========================================================================
Date: Fri, 28 May 1999
21:49:53 EDT
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Marilyn Williams
<Mbwill43@AOL.COM>
Subject: Re: Father-In-Law
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DEAR LIZ, SO SORRY TO HEAR OF YOUR FATHER-IN-LAWS DEATH, MY BEST TO
YOU AND
YOUR HUSBAND AND THE REST OF THE FAMILY.YOUR IN OUR PRAYERS. MARILYN