Thank you so much!!!
The Niemi's
-----Original Message-----
From: GSieb91515@AOL.COM
[SMTP:GSieb91515@AOL.COM]
Sent: Wednesday,
March 31, 1999 3:35 PM
To:
APERT@LISTSERV.AOL.COM
Subject:
Re: Hello! We are here!!
Welcome Neimi family from
the Sieberts in Houston, TX. Our Jonathan
is 2
years old and has had 7
surgeries to date. We now have 10
functional fingers
and are doing well other
than being speech delayed. Thanks for
joining our
growing family. We
look forward to chatting with you.
Brenda, George, Melissa and
Jonathan Siebert
Houston, TX
=========================================================================
Date: Wed, 31 Mar 1999
23:59:52 -0600
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From: "Niemi, Liz"
<Liz.Niemi@NMB.NORWEST.COM>
Subject: Re: Hello! We are here!!
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Thank you so very much! I just finished writing a letter to Cristy.
By the
way, I think grandparents are very special too! My mother, and my husband's
mother have been absolutely amazing since Jake's been born. I
can never
thank my mother enough for the things she's done for me and my family.
I've
never had to ask, she's always given. She loves Jake with all
her heart. I
couldn't have asked for better, loving grandma's.
Thank you again!
Liz, Steve, Taylor & Jake
-----Original Message-----
From: Marilyn
Williams [SMTP:Mbwill43@AOL.COM]
Sent: Wednesday,
March 31, 1999 8:14 PM
To:
APERT@LISTSERV.AOL.COM
Subject:
Re: Hello! We are here!!
HI JAKE AND FAMILY, I SEEN
THE TAPE OF JAKE'S SURGERY AND SOME OF
WHAT YOU GO
THROUGH DAILY, YOU SURE
ARE GREAT PARENTS AND ONE DAY JAKE WILL KNOW
HOW
SPECIAL YOU ARE. I'M CARLEE'S
GRANDMOTHER YOU SEE ME ON THE LIST
FROM TIME TO
TIME. WELCOME TO OF FAMILY.MARILYN
=========================================================================
Date: Thu, 1 Apr 1999
00:02:19 -0600
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From: "Niemi, Liz"
<Liz.Niemi@NMB.NORWEST.COM>
Subject: Re: Hello! We are here!!
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Hi Cristy!
I'm so glad you were able to see the show!! I agree about seeing
another
family's story. Just recently, we saw the "Restoring Faces" show
on the
Discovery Channel which featured a little girl with Aperts. I
just cried!
I was able to later track the mother down and talk with her over the
phone.
What a strong family THEY are!!
I would love to get more information about the picture exchange.
I do not
have direct access to the Internet. Only an e-mail address at
this time.
Is this something that is being done over the Internet or by mail?
Carlee
sounds like a cutie...I love curls! Although Jake's tend to get a little
out
of control at times. I just recently got his hair cut.
He looks like such
a little man now!
Wait! She is a cutie...I just looked at her picture from Teeter's Page.
What a great smile!!!
Our thoughts and prayers will be with you on the 12th. As you
saw, it is
very tough the first week. But you'll find that these kids are
SO
resilient. They bounce back so fast, it's unbelievable. Are they
doing the
frontal orbital advancement or are they doing the back of the head?
Jake
had both done. He had the back done first at 2 months of age,
then the
front when he was 8 months - which you saw on the show. He just
recently
had his second hand surgery, and now has 5 fingers! He gets so
excited...he
just doesn't know what to do with all those fingers now. His
thumbs were
independent when he was born, and had them straighten this last surgery.
Thanks for writing! Please keep in touch and let me know how
the surgery
goes!!
-----Original Message-----
From: Cristy
Williams [SMTP:CARLEE0604@AOL.COM]
Sent: Wednesday,
March 31, 1999 7:50 AM
To:
APERT@LISTSERV.AOL.COM
Subject:
Re: Hello! We are here!!
Hello to the Niemi Family,
We are Cristy, Clyde and
Carlee 10 mos baby girl with Aperts. We saw
your
show. We had heard about
it, and it didn't air here in Florida, so
we ordered
the tape. I have to say
it did make me cry. Just seeing another
family's story
is enough to make you cry.
Jake is so cute. Carlee has curls too.
Her first
cranial surgery is on April
12th. SOON! I am glad you guys did this
program
and we got to see it. I
don't want no suprises and want to know
everything I
can about Carlee's surgery.
You guys are a very strong family. I
don't know if
you got the address off
of here to send your name and address,
because the
listserv is doing a picture
exchange. We are still in the process
of getting
a picture of all 3 of us.
I think there was 44 people on the
list.Well I am
glad you guys are on the
listserv. Take care.
Love,
Cristy, Clyde, and Carlee
=========================================================================
Date: Thu, 1 Apr 1999
01:27:24 -0600
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From: "MARK E. DUBAS"
<Murphy@PLATTEVALLEY.NET>
Subject: Re: toes..
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: quoted-printable
Hi Brenda....
In my case..I did not have toes seperated,
according to my medical =
records, it was discussed, but decided that it wasn't necessary.(by
=
doctors and parents) I have no regrets about this, as I get around
as =
anyone elese does.=20
I have (or had) 2 problems with my feet, one..I had an
extra bone =
that made the ball of each foot get raw, (especially in a swimming
pool) =
surgery was done to remove it, and since had no problems with it.
The second problem, I must watch my toe nails, as three on each
foot =
wrap around the end of the toe, and easily become ingrown. In my humble
=
opinion, I think it would be like that even if I had my toes =
seperated.It's nothing a regular clipping won't take care of.
Take Care..
Mark
----------
From: GSieb91515@AOL.COM
Sent: Wednesday, March 31, 1999 3:29 PM
To: APERT@LISTSERV.AOL.COM
Subject: Re: Myrtle Beach
We had surgery on 3/1 and are still in the rewrap phase. Jonathan
is =
only 2
but knows the drill so well he climbs up on the vanity in the bathroom
=
and
holds his hand out to do his bandages just like some kids would go
to =
brush
their teeth. It continues to amaze me how tolerant and adaptable
our =
kids
are. We now have 10 lovely fingers and they are all functional.
We did =
go
for a second opinion before we started our hand surgeries because the
=
first
surgeon was very negative and wouldn't give us any encouragement at
all =
in
terms of getting all 10. We went to another surgeon after seeing
his =
work
(How are you Miss Kimberly?) and he didn't hesitate to say there would
=
be no
problem with getting all 10. Of course, he wouldn't know the
vascular
situation until he went in. We were very fortunate in that he
was able =
to
provide Jonathan with 10 wonderful working fingers.
I know we have discussed this in the past but we are now facing the
=
difficult
decision as to should we do the toes. We are leaning towards
not since
Jonathan has no orthopeodic concerns and it would be strictly cosmetic.
=
I
just can't imagine doing all the skin grafts again. We thought
maybe we =
would
wait and let Jonathan make the decision when he is older. Although
it =
would
be so much easier on him to do it while he is little and doesn't =
remember the
surgery and wouldn't miss school, etc.
I'd love to hear back from some of our adults with Aperts and if they
=
didn't
have it done do they wish they had as a small child, etc.?
We would love to go to the Apert conference. But the airline my
husband =
works
for doesn't fly to that area and it's too far for us to drive and still
=
have
sufficient time for R and R. I'm still trying to figure out a
way to =
go.
Lisa, we have had some difficult situations with children staring
and =
asking
rude questions too. We try very hard to answer in a positive
manner.
Although I do find myself staring back at the rude adults who should
=
know
better. My answer to kids is that God made Jonathan look a little
=
different
but that he is a very special child and is the same as them on the
=
inside.
That usually takes care of the kids. I still feel like my heart
was =
stabbed
when people make cruel comments about my precious baby and really have
=
to
fight back the tears but I'm getting stronger with each incident.
Fortunately, we don't have too many negative situations. I find
that =
most
people smile and act as if Jonathan is just like any other child.
I've =
even
had comments like "he is so cute". That really makes my day.
Welcome to all the new families. We wish everyone well.
Brenda
Houston
=========================================================================
Date: Thu, 1 Apr 1999
08:47:37 EST
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From: Firefli007@AOL.COM
Subject: Re: Myrtle Beach
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Hello,
Jenny form Georgia here..
As for the toes.. Mine are still webbed as well...parents and docs
choice.
Summer shoes are a bit of a pain(flip flops just won't work, but it's
not that
much of a problem.)...Other than cosmetic reasons have had no real
desire to
change.
I do have problems finding shoes that are "cute" yet comfortable.
that could
just be a girl thing anyway.
I pray that everyone has a "Hoppy Easter" and God Bless!
Love Jenny
=========================================================================
Date: Thu, 1 Apr 1999
09:15:38 -0500
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From: Don Sears <dsears@SCRS.STATE.SC.US>
Subject: picture exchange info for newcomers
MIME-Version: 1.0
Content-Type: text/plain
Welcome Liz and all other recent subscribers!
The picture exchange is something we did about a year ago, and it was
so
popular theat we are doing it again. If you want to participate,
I will
include your name and mailing address at
http://www.apert.org/pictures/addresses and you can use this same web
address to retrieve the current list. Send a picture you like
to each
and every address on the list, and they will each send one to you!
It's
nice to be able to create a family scrapbook.
If you want to be included, send your mailing address to
addresses@apert.org and I will add you to the bottom of the list.
There
are currently 46 names on the list. Cathie has done some checking
around our area and found Wal Mart to be the lowest price (18 cents
per
copy) for reproductions from negatives.
I have also made a Microsoft Word document that prints the labels on
Avery 5161 address labels, if anyone can use these let me know and
I'll
email you the file directly and I'll also make it available as a
download from the addresses page.
We can't wait for the mail everyday!!!
Don
=========================================================================
Date: Thu, 1 Apr 1999
09:20:39 -0500
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From: Jim and Kelly
Younkin <JimandKelly@YOUNKIN.COM>
Subject: Hi and good news!
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
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Hi everyone and welcome to the new families. Our best wishes go
out to
everyone. We've been mostly lurking lately but we've been reading
everything with interest! We've had some good news here.
Sara just had her
3rd birthday and with that birthday she is no longer eligible for physical
therapy through our local Early Intervention program. So they
came from the
Intermediate Unit to test her to see if she qualifies for services
through
them. She didn't qualify!!! She has no significant delays
in any area!
They will evaluate her again if we notice any problems in the future,
but
for right now we are finished with therapy appointments! This
is one of
those milestones that we all feel we'll never reach as we go from one
doctor/therapy appointment to the next, but we also need to keep remembering
that there IS light at the end of the tunnel. Take care, everyone,
and
Happy Easter! Kelly
=========================================================================
Date: Thu, 1 Apr 1999
18:40:42 EST
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From: BBarn60368@AOL.COM
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Dear Joanne:
You mentioned you are coming to Fl. sometime soon. Which part?
Would love
to meet you, if you are going to be near Orlando. I would also
love for my
Shirley (5) to meet you. She needs to be introduced to some of
you older
Apert "heroes".
Much love,
Alice
=========================================================================
Date: Thu, 1 Apr 1999
20:18:22 EST
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From: Cristy Williams
<CARLEE0604@AOL.COM>
Subject: Re: Hello! We are here!!
MIME-Version: 1.0
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Liz,
They are doing Carlee's forehead and brow area advancement, and also
the back
of the head. Because it is kind of tall and flat. So they are going
to shape
it. Carlee has a ridge that goes across her head, where the skull fused,
they
will also remove that. The surgery is scheduled for 5 to 6 hours. How
is
Jake? Give him a big hug from us.
Love,
Cristy and Carlee
=========================================================================
Date: Thu, 1 Apr 1999
20:21:55 EST
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From: Gail Montes <Gailsvm@AOL.COM>
Subject: Re: Hello! We are here!!
MIME-Version: 1.0
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Hi Liz,
If you get copies of the show, then I would be interested in viewing
them.
Let me know if you get them! Otherwise, I'll wait until it is
shown again.
I have not heard of NORD, but sounds like that would be a good place
to
contact. Do you have their address?
Thanks! Gail
=========================================================================
Date: Thu, 1 Apr 1999
20:45:26 -0500
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From: ROBIN L HILL
<CARMENRAE@PRODIGY.NET>
Subject: Joanne's connection in Atlanta
MIME-Version: 1.0
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Hey Joanne! When will you be in the Atlanta airport? Will
you have a
layover? We would love to come meet you if even for just a short
time. We
only live about 20 minutes from the Atlanta airport. Let us know;
we could
keep you company between flights.
The Hills (Mike, Robin, & Carmen Rae)
=========================================================================
Date: Thu, 1 Apr 1999
20:48:38 EST
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From: NephiRose@AOL.COM
Subject: Re: toenails, heeeeeeelp!!
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Sarah V. has been having some problems with her toenails. I took
her to a
podiatrist and he just looked at me and shrugged his shoulders.
The middle
toenails are bloody and coming out at the roots (slowly by a thread).
Her
toenails are really crusty and thick in some areas. Anybody
have experience
with this? It really is painful for her and I feel bad.
On another tangent.....I'm really excited about this summer. I
was able to
get the right insurance that enables me to visit doctors outside of
Utah.
So.....this summer I'm driving out to see Dr. Marsh in Missouri and
Dr. Upton
in Massachussets. I'm nuts enough to make this a vacation and
take ALL of my
four kids with me alone! (My husband has to work.)
Belinda
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Date: Thu, 1 Apr 1999
21:27:31 EST
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From: Marilyn Williams
<Mbwill43@AOL.COM>
Subject: Re: picture exchange info for
newcomers
MIME-Version: 1.0
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HI DON PLEASE SEND ME THE LABEL DOWN PROGRAM YOU MADE THANKS. mbwill43@aol.com
=========================================================================
Date: Thu, 1 Apr 1999
22:14:38 EST
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From: Yonstein@AOL.COM
Subject: Re: Hello! We are here!!
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Hello and welcome to the Niemi family and any other new families.
We are the Krebs, Brian, Janine, Nicholas and our Emily, 20 months old
with
Apert.
Her page has just been updated if anyone is interested. This
is a great
place full of love and support and information.
Wishing everyone a happy holiday and speedy recovery to any of our kids
who
are recovering.
Best wishes,
Janine
=========================================================================
Date: Thu, 1 Apr 1999
22:24:53 +0000
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From: "J. G. Lindamood"
<chanan8@JUNO.COM>
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Oh Alice, I could count the goose bumps I got when I read your note.
I
am really bummed about not being able to go to Myrtle Beach to meet
everyone going. I will be very close to Orlando. My grandmother
lives
in Apopka. I have family in Daytona Beach too so I will be taking
a trip
or two or three to the beach! I WOULD LOVE TO MEET YOU!!! I found
out
today I have half of the paid time off I need to go so far, so I'm
shooting for the end of April. I will send you more info once
I know
more.
This goes true for the Hills as well! Oh yes! God is working
things out
for me! I am going to meet some of you all anyway!
Belinda, I would find another podiatrist. There just has to be
someone
out there who could help her. I can't imagine what you are describing,
but I can feel her pain. My toenails are somewhat all fused together
with cracks where the toes should have been separated. Sometimes
this
area gets sore and bleeds. It is painful.
My day took a spiral downward after 3:00. One of my patients from
a few
weeks ago has returned and is half way to heaven. She has not
eaten in
the two weeks since she was at the hospital. She was fine when
she left
two weeks ago. One of the things I hate about my job.
Hope all is well where you are.
Joanne
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Date: Thu, 1 Apr 1999
23:20:43 EST
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From: Cristy Williams
<CARLEE0604@AOL.COM>
Subject: Re: No Subject
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Joanne,
When do you go to Daytona? We have our family reunion there every
year in
August.
I would love to meet you too.
Cristy
Orange Park, Florida
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Date: Thu, 1 Apr 1999
22:58:40 -0600
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From: "Niemi, Liz"
<Liz.Niemi@NMB.NORWEST.COM>
Subject: Re: Hello! We are here!!
MIME-Version: 1.0
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Cristy,
WOW! They needed two surgery's to do that for Jake. His
head was pretty
severe though. He was a really big baby (11 lbs. even) at birth,
and
therefore his head was pretty misshapen. Nope, I did NOT have
a C-Section!!
I still say OUCH! every time I think about it..ha, ha!! His head
was really
tall and flat in the back, and he had an open area of about 3 inches
running
from his forehead, all the way across the top to the back of his head.
Putting the two surgeries together would've been about 6 hours, I guess.
Anyway, we will definitely be thinking of you guys....take some reading
material. You'll find you will have a lot of down time while
waiting.
Jake is doing great! He is going in on April 9th for a bronchoscopy
and
sleep study to see if we may be able to remove his trach. I'm
very nervous
about it, but not expecting miracles. Just like everything else,
we'll wait
and see. Of course, we first want to do what's best for him.
But it would
truly be a relief on us since we do not have any in-home nursing.
I really
like being home with him and my daughter though. Also, summer's
coming....and I'd like for him to be able to play freely with other
kids in
the sandbox, etc. With a trach, he just can't.
Talk to you later!
Liz
-----Original Message-----
From: Cristy
Williams [SMTP:CARLEE0604@AOL.COM]
Sent: Thursday,
April 01, 1999 7:18 PM
To:
APERT@LISTSERV.AOL.COM
Subject:
Re: Hello! We are here!!
Liz,
They are doing Carlee's forehead
and brow area advancement, and also
the back
of the head. Because it
is kind of tall and flat. So they are going
to shape
it. Carlee has a ridge that
goes across her head, where the skull
fused, they
will also remove that. The
surgery is scheduled for 5 to 6 hours.
How is
Jake? Give him a big hug
from us.
Love,
Cristy and Carlee
=========================================================================
Date: Thu, 1 Apr 1999
23:03:46 -0600
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From: "Niemi, Liz"
<Liz.Niemi@NMB.NORWEST.COM>
Subject: Re: Hello! We are here!!
MIME-Version: 1.0
Content-Type: text/plain
Gail,
I will definitely let you know when and if I can get them! You
can contact
NORD at the following address:
National Organization for Rare Disorders, Inc.(NORD)
P.O. Box 8923
New Fairfield, CT 06812-8923
Phone: 203-746-6518
Fax:
203-746-6481
E-mail: orphan@NORD-RDB.com
<mailto:orphan@NORD-RDB.com>
Home Pg: http://www.nord-rdb.com/~orphan
<http://www.nord-rdb.com/~orphan>
Ask them to add you to their mailing list for their newsletter too!
Let me
know if you find anything out!
Liz
-----Original Message-----
From: Gail Montes
[SMTP:Gailsvm@AOL.COM]
Sent: Thursday,
April 01, 1999 7:22 PM
To:
APERT@LISTSERV.AOL.COM
Subject:
Re: Hello! We are here!!
Hi Liz,
If you get copies of the
show, then I would be interested in viewing
them.
Let me know if you get them!
Otherwise, I'll wait until it is shown
again.
I have not heard of NORD,
but sounds like that would be a good place
to
contact. Do you have
their address?
Thanks! Gail
=========================================================================
Date: Thu, 1 Apr 1999
23:15:29 -0600
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From: "Niemi, Liz"
<Liz.Niemi@NMB.NORWEST.COM>
Subject: Re: Hello! We are here!!
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
We are pleased to be part of this very supportive group of people.
I really
don't know how we would've coped without the outpour of love we've
received!
Thank you so very much!
The Niemi's
-----Original Message-----
From: Yonstein@AOL.COM
[SMTP:Yonstein@AOL.COM]
Sent: Thursday,
April 01, 1999 9:15 PM
To:
APERT@LISTSERV.AOL.COM
Subject:
Re: Hello! We are here!!
Hello and welcome to the Niemi family and any other new families.
We are the Krebs, Brian,
Janine, Nicholas and our Emily, 20 months
old with
Apert.
Her page has just been updated
if anyone is interested. This is a
great
place full of love and support
and information.
Wishing everyone a happy
holiday and speedy recovery to any of our
kids who
are recovering.
Best wishes,
Janine
=========================================================================
Date: Thu, 1 Apr 1999
21:18:03 -0800
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From: Apert Mail <apertmail@USWEST.NET>
Subject: Re: toenails, heeeeeeelp!!
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Belinda~
when our Courtney was born there was a lady at the hospital who had
a son with
apert, and she had told us a few things that she went through and one
of the
things she told us was about her sons toenails..... she said they were
hard and
ingrown and such and she said she used nair on them, to keep them soft.
You
might not want to try it on the sore toes that are bleeding but maybe
after you
get it held it might help.
well thats just something I have heard about.
hope all works out for you.
Dawn
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Date: Fri, 2 Apr 1999
00:39:52 -0500
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From: Rich Thornquist
<rlthorn@EARTHLINK.NET>
Subject: Re: toenails, heeeeeeelp!!
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Belinda,
I'm not real sure what you mean by "coming out of the roots", but Andrew
has
ingrown toenails between each "regular" toenail. I have had him
bump them in the
past and they have bled a little, but it sounds like yours is always
bleeding.
All I do is to keep it all under control is, give Andrew a long bath,
so they
soften up and then immediately when he gets out, I start clipping.
It has taken
him a long time to get used to this, he used to scream, but now he
just tends to
lie there. But I have to clip quick because his patience runs
out quickly. Dr.
Upton has removed the ingrown toenails once, but unfortunately, they
grew back
shortly after the surgery. So now we will have to wait until
Andrew is 5 and he
will go back in and actually cut wedges out between each toe.
Not actually
cutting into bone (as to separate), but cutting tissue and ALL of the
ingrown
toenails.
When are you coming to Mass. to see Dr. Upton? I would love to
meet with you.
There are a couple others that I'm sure share my interest in meeting
you (Sheila
and Gail). It would be great to get together. I will have
had my baby by then
and up and around. Please let me know what your plans are.
Lynn Thornquist
rlthorn@earthlink.net
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Date: Fri, 2 Apr 1999
10:47:00 EST
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From: Shirley Tanner
<TANRANCH@AOL.COM>
Subject: Re: picture exchange info for
newcomers
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Dear Don & Cathie,
I have put our name on the list for the picture
exchange & can't wait to
start receiving them either!! But my question is: What
do I need to do to
get Collin's picture on Teeters Page and to have his own page?? I would
like
everyone to see our beautiful son!!
Thanks for this wonderful listserv. It is
full of such wonderful people.
Regards,
Shirley Tanner
Hartford, AL
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Date: Fri, 2 Apr 1999
10:42:15 EST
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From: Shirley Tanner
<TANRANCH@AOL.COM>
Subject: Re: toenails
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Hi Everyone,
Just thought I'd put my 2 cents in about toenails.
Collin had his toes
seperated when he had his fingers seperated @ 11mos & 14 mos
He was in
bandages on all 4 (arms & legs) but it didn't stop him from anything.
He
even learned to walk in bandages!! I cut his toenails about once
a week,
after a bath while they are soft, and so far haven't had any problems.
The
nails on the big toes tend to curl up. He has one problem area where
caluses
(sp?) build up between 2 toes, but I cut what I can of it with clippers
too.
I have to buy wide shoes for him but I think he would need wide shoes
even if
the toes had not been seperated. Collin has pretty good balance--he
walks on
the balance beam at school & doesn't fall off. We have no
regrets at having
them done and it really wasn't too bad having hands & feet done
all wrapped
at the same time. Got it over with early on!!
Take care,
Shirley Tanner
Hartford, Alabama
=========================================================================
Date: Fri, 2 Apr 1999
12:00:24 -0500
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From: Don Sears <dsears@SCRS.STATE.SC.US>
Subject: Re: picture exchange info for
newcomers
MIME-Version: 1.0
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Thanks Shirley, I'm SO glad you asked! I'm just finishing the
last of
many new pages and page updates and was hoping today to announce that
everything is done, please check your individual pages and make sure
the
pages are the way you would like them to look. Right now I am
still
working on Kelly Spadini's and Michelle Bradley's page, and there are
some photos that used to be in the clubhouse that will be on the
individuals' pages, also some new pictures of Courtney Jennerjohn
visiting Sarah in Korea - those will be posted to the clubhouse first.
For those of you who would like individual web pages and have not sent
me anything yet, there are a few ways you can get the information to
me.
The picture exchange is the perfect excuse for you to go ahead and
get
that face out on Teeter's Page!!!
If you have a scanner or digital camera, choose your pictures and email
them to me at updates@apert.org. Attach the pictures as files.
JPG
format works best for the web, and that's what I will convert them
to
anyway.
If you don't have the means to send the pictures electronically, the
old-fashioned way still works! Mail your photos to us at
Don Sears
1900 Shadowood Drive
Columbia, SC 29212
and we will scan them and return them to you. Because we have
the
picture exchange going on, make sure it's clear to us which pictures
are
for the web page, and which pictures we can keep as part of the
exchange!!!
In either case, make sure you number the pictures in the order you would
like for them to be presented, write captions if you would like, and
let
me know if you would like for a particular one to be used for the mini
on Teeter's main page.
Your story can be any length - and I prefer that you send it
electronically so I don't have to do all that typing!!! Any means
is
acceptable - email text, Microsoft Word, Wordperfect, Notepad, Wordpad,
Write, or any other word processor. Email the text or file attachment
to updates@apert.org.
You can send pictures first and text later or vice versa, or send all
at
the same time. Also let me know what personal info you want on
Teeter's
main page - for most people I am listing child's name, date of birth,
parents names, email address, and city/state/country.
I want to make sure you all understand that I enjoy doing this, that
it
is NOT "too much trouble" and it would make me happy if every single
one
of you wrote in with web page requests. We love our big family,
and the
site that we've chosen does not put any restrictions on us for space.
And after April 15, I'll have lots of time to get the pages done as
they
are sent to me.
Also.......
I have put the labels for the picture exchange on the website at
http://www.apert.org/pictures/addresses that you can download and use
with either Word '95 or Word '97 and Avery 5161 or similar labels.
You
will see the links near the top of the page. Just save the file,
open
it in Word, and print on your labels!
We're leaving for the beach in the morning and returning Thursday.
So,
if you write to me at apert.org I won't get your mail until Friday
(a
week from today). We will check the email at CatNDon@aol.com
from time
to time at the beach, and try to make the Sunday night chat - depends
on
what Teeter is into! Take this week and get your page materials
together and send it to us......
Have a great weekend, and a great week. We love you all!
Don
> -----Original Message-----
> From: Shirley Tanner [SMTP:TANRANCH@AOL.COM]
> Sent: Friday, April 02, 1999 10:47 AM
> To: APERT@LISTSERV.AOL.COM
> Subject: Re: picture exchange info
for newcomers
>
> Dear Don & Cathie,
> I have put our name on the list for
the picture exchange & can't
> wait to
> start receiving them either!! But my question is: What
do I need to
> do to
> get Collin's picture on Teeters Page and to have his own page?? I
> would like
> everyone to see our beautiful son!!
> Thanks for this wonderful listserv.
It is full of such wonderful
> people.
>
>
> Regards,
> Shirley Tanner
> Hartford, AL
=========================================================================
Date: Fri, 2 Apr 1999
13:24:47 EST
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From: Shirley Tanner
<TANRANCH@AOL.COM>
Subject: Re: picture exchange info for
newcomers
MIME-Version: 1.0
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THanks Don! I will try not to put this off any longer!
Shirley
=========================================================================
Date: Fri, 2 Apr 1999
10:44:19 -0800
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From: "Brent E. Young"
<beyoung@IX.NETCOM.COM>
Subject: Re: What to say to other Children?
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Hi All,
I just got back from a vacation in Washington DC and I am catching up
on
my e-mails. I went to Washington with a school group and without my
parents. There were a few times where my group noticed a few people
staring in my direction. It seemed like they felt very awkward and
I
know they were not sure what I was going to do. By now I am pretty
used
to it. I don't have as much of problem when younger kids do it as I
do
when older kids do. I feel that older kids should have been taught
manners when younger kids should be too, but they are just curious.
Well that is all for now.
See you later,
Kelly Spadini
California
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Date: Fri, 2 Apr 1999
15:42:16 -0800
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From: Robin MacDonald
<macdonal@GOLDEN.NET>
Subject: Birthday wishes
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Lindsay is seven today..and wishes to say "happy birthday" to
Teeter...who if I am not mistaken..turns seven tomorrow!
Happy Birthday girls!!
=========================================================================
Date: Fri, 2 Apr 1999
16:36:20 -0500
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From: Don Sears <dsears@SCRS.STATE.SC.US>
Subject: Re: Birthday wishes
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How right you are!!! It is so hard to believe that seven years
have
flown by. It's hard for us to remember life "BT" (before Teeter).
Thank you very much for the birthday wishes and happy birthday to
Lindsay as well!
Don
> -----Original Message-----
> From: Robin MacDonald [SMTP:macdonal@GOLDEN.NET]
> Sent: Friday, April 02, 1999 6:42 PM
> To: APERT@LISTSERV.AOL.COM
> Subject: Birthday wishes
>
> Lindsay is seven today..and wishes to say "happy birthday" to
> Teeter...who if I am not mistaken..turns seven tomorrow!
>
> Happy Birthday girls!!
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Date: Fri, 2 Apr 1999
16:33:25 EST
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From: Liz Saylan <LSaylan@AOL.COM>
Subject: Re: Birthday wishes
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happy birthday to Teeter!!!!! Hope all is well with you all i am online
right
now and i need help with excite i created my name but want to change
it can u
help me ?
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Date: Fri, 2 Apr 1999
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From: Michael Sharrow
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Subject: Re: Birthday wishes
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HAPPY BIRTHDAY LINDSAY AND TEETER!! May your birthday bring you
health and
happiness always!
Your friend, Michael (Talitha's dad)
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Date: Fri, 2 Apr 1999
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From: Sheila MacDonald
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Subject: Re: Birthday wishes
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Happy birthday Lindsey and Teeter!!!!!! Hope that you both have a great
7th
birthday
Sheila (Paige's mom)
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Date: Fri, 2 Apr 1999
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Joanne:
Definitely let me know the details of your trip to Fl! We are
actually in
Lake Mary which is sort of between Apopka and Daytona! Can you
believe that?
Can't wait to get together!
Much love and Happy Easter!
Alice
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Date: Fri, 2 Apr 1999
19:49:39 EST
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From: Shirley Tanner
<TANRANCH@AOL.COM>
Subject: Re: Birthday wishes
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Happy Birthday to Teeter & Lindsay!! Collin also just turned seven
2 days
ago!! (3-31)
Shirley
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From: GSieb91515@AOL.COM
Subject: Re: toenails
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Shirley,
Have you noticed if Collin's big toes have abducted much since they
were
separated. How old is he now? We are at the point of making
a decision
whether to do the separations or not for Jonathan. Our biggest
fear is that
the big toes would grow more outward and need to be amputated.
Was your
surgeon able to tell you that wouldn't be a concern before Collin's
toes were
separated?
Thanks for the info.
Brenda
Houston
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Date: Fri, 2 Apr 1999
20:09:15 EST
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From: GSieb91515@AOL.COM
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HAPPY BIRTHDAY to Lindsey and Teeter. I'd also like to send Happy
Birthday
wishes to : Sarah LeCara (4/4) and Andrew Hartley (4/30).
And to anyone
else who shares a birthday in April. This is the latest info
I have from the
Birthday list that we did some time ago.
Also, HAPPY EASTER to everyone. We hope that you share this blessed
day with
family and friends in good health.
Brenda
Houston
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Date: Fri, 2 Apr 1999
21:58:13 EST
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From: Marilyn Williams
<Mbwill43@AOL.COM>
Subject: BIRTHDAY'S
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HAPPY BIRTHDAY TO TEETER,LINDSEY AND COLLIN!!!!!!!!!AND MAY GOD
BLESS YOU
ALL EVERYDAY OF YOUR LIFE.MARILYN (CARLEE'S GRANDMA)
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Date: Fri, 2 Apr 1999
22:59:17 EST
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From: Mary Bresnahan
<Munch35738@AOL.COM>
Subject: Re: Birthday wishes
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Happy birthday to everyone celebrating this week. Mary
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Date: Sat, 3 Apr 1999
00:45:29 EST
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From: Lisa Guyette
<LAM1126@AOL.COM>
Subject: Happy Birthdays
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Happy Birthday to Teeter, Lindsey, Sarah and Andrew.
Love, your new friend Samantha and her mom Lisa
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Date: Sat, 3 Apr 1999
00:49:41 EST
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From: Lisa Guyette
<LAM1126@AOL.COM>
Subject: What to say to other Children
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First off thanks everyone for your response to the above question.
I emailed
a few answers to my friend whose neices were going to meet Samantha
for the
first time. We still hadnt decided if we should tell them ahead
of time or
not. Well we didn't have to they read the emails. Then
they looked at her
picture that is on the refrigerator and didn't say much. Well
these two
girls of eight and twelve were the most compassinate and sweetest girls
I
ever met. They kept looking in on her and smiling.
I saw one walk by her
later and take Samantha's hand into hers before going on her way (we
were at
a amusement place). It was wonderful.
Love, Lisa Guyette
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Date: Fri, 2 Apr 1999
22:25:09 -1000
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From: "Joana H. Magno"
<magnomd@ALOHA.NET>
Subject: Re: toenails & feet
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Hi,
Interesting that you are discussing the toe issue again. We were
always
concerned about our daughter's feet because the toes did stick out
at almost a
right angle, just like her cute little thumbs did. We had
her big toes
separated from the rest of the toes, thinking that she might
be able to wear
slippers, since we live in Hawaii --- not totally successful
since the big
toes remained shorter than the rest of her toes, and do not really
provide
enough of a web space.
We have noticed, however, that with time and shoes,
that her foot is much
straighter and not as wide as what I would have expected
from infancy. She
does have a little callusing at the ball of her feet, though,
which might
need a little help later on in life.
The unseparated toes were quite a hassle in terms of figuring
out nail care.
She gets crud stuck in the crevices, including tough old skin/cuticle.
We found
that the best way to deal with it is cuticle cream after warm baths
to soak it
away, along with a little careful trimming with those cuticle
scissors,
nippers. In between, we file and use a little stone cuticle
cleaner, which is
pointed at the tip, making it easier to get into those little areas.
Wish we
could figure out a way to prevent the toenails from curling under,
though!!
Joana Magno
GSieb91515@AOL.COM wrote:
> Shirley,
>
> Have you noticed if Collin's big toes have abducted much since they
were
> separated. How old is he now? We are at the point of
making a decision
> whether to do the separations or not for Jonathan. Our biggest
fear is that
> the big toes would grow more outward and need to be amputated.
Was your
> surgeon able to tell you that wouldn't be a concern before Collin's
toes were
> separated?
>
> Thanks for the info.
>
> Brenda
> Houston
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Date: Sat, 3 Apr 1999
11:21:35 -0500
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From: Timothy Holt
<tholt@WEBTV.NET>
Subject: Birthday's
Content-Type: Multipart/Mixed; Boundary=WebTV-Mail-1781214755-8851
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--WebTV-Mail-1781214755-8851
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HAPPY BIRTHDAY to:
~~ Teeter~~
~~
Lindsay~~
~~ Sarah~~
~~ Andrew~~
~~ Collin ~~
I hope you all have a wonderul day!
--WebTV-Mail-1781214755-8851
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<html>
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<embed src=
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</html>
--WebTV-Mail-1781214755-8851--
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Date: Sat, 3 Apr 1999
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From: Randy & Deb
Picht <rldpicht@INFO.STARPOINT.NET>
Subject: Happy Birthday
MIME-Version: 1.0
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We would like to wish a Happy Birthday to all with Birthday's this =
month.
The Picht's
Marshall, MN
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</HEAD>
<BODY bgColor=3D#ffffff>
<DIV><FONT size=3D2>We would like to wish a Happy Birthday to
all with =
Birthday's=20
this month.</FONT></DIV>
<DIV><FONT size=3D2></FONT> </DIV>
<DIV><FONT size=3D2>The Picht's</FONT></DIV>
<DIV><FONT size=3D2>Marshall, MN</FONT></DIV></BODY></HTML>
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Date: Sat, 3 Apr 1999
14:43:58 -0600
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From: Randy & Deb
Picht <rldpicht@INFO.STARPOINT.NET>
Subject: Happy Easter
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From our family to yours. We would like to wish everyone a Happy
=
Easter.
Hope the Easter Bunny comes to all the kids!!!!!!!
The Picht's
Marshall, MN
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<BODY bgColor=3D#ffffff>
<DIV><FONT color=3D#000000 size=3D2>From our family to yours.
We =
would like to=20
wish everyone a Happy Easter.</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT color=3D#000000 size=3D2>Hope the Easter Bunny comes
to all =
the=20
kids!!!!!!!</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT color=3D#000000 size=3D2>The Picht's</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2>Marshall, =
MN</FONT></DIV></BODY></HTML>
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Date: Sat, 3 Apr 1999
22:27:00 EST
Reply-To: Information exchange and Internet
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From: Shirley Tanner
<TANRANCH@AOL.COM>
Subject: Re: toenails
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Dear Brenda,
Dr Fearon has never mentioned "amputation"
as a future problem for the
big toes.
The big toes are somewhat like the thumbs, they tend to curve outward
but not
too bad. Clipping all the toenails is really no worse than clipping
your own
except Collin doesn't much like having his feet messed with in any
way. I am
not sure if it tickles or hurts or he just doesn't like his feet being
touched. If you could lool at his toes they look as if he has
permanent
"cramps" in the toes, if you can imagine that. They are so straight
& stiff.
But as I said before he has good coordination. I really can't
say which is
better- to seperate or not-because I have nothing to compare to.
I have
never seen another Apert child or adults feet. I have seen a picture
&
cosmetically speaking, Collins feet look better.
Hope this helps with your decision. All I can really say is I
am glad we did
it.
Shirley
PS Collin lost his 3rd baby tooth tonight! The Easter Bunny & the
Tooth Fairy
get to visit. :)
=========================================================================
Date: Sat, 3 Apr 1999
19:34:54 -0800
Reply-To: Information exchange and Internet
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Sender: Information exchange and
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From: "Brent E. Young"
<beyoung@IX.NETCOM.COM>
Subject: Re: Birthday wishes
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
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Shirley Tanner wrote:
> Happy Birthday to Teeter & Lindsay!! Collin also just turned seven
2
> days
> ago!! (3-31)
>
> Shirley
Hi all,
Happy 7th Birthday to Lindsay and Teeter. Also happy 7th Birthday two
days ago to Collin. Hope you all have a very special day. =)
Kelly Spadini
=========================================================================
Date: Sun, 4 Apr 1999
01:30:11 -0600
Reply-To: Information exchange and Internet
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From: cal <cal@PHOENIX.NET>
Subject: Re: Birthday wishes
MIME-Version: 1.0
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Happy Birthday to Teeter, Lindsey and Collin .
Our little Sarah's Birthday is April 4th she is now 2 year's old .This
Easter is a very is special one for all of us .
God Bless all of you..
The LeCara's
-----Original Message-----
From: Brent E. Young [SMTP:beyoung@IX.NETCOM.COM]
Sent: Saturday, April 03, 1999 9:35 PM
To: APERT@LISTSERV.AOL.COM
Subject: Re: Birthday wishes
Shirley Tanner wrote:
> Happy Birthday to Teeter & Lindsay!! Collin also just turned seven
2
> days
> ago!! (3-31)
>
> Shirley
Hi all,
Happy 7th Birthday to Lindsay and Teeter. Also happy 7th Birthday two
days ago to Collin. Hope you all have a very special day. =)
Kelly Spadini
=========================================================================
Date: Sun, 4 Apr 1999
19:21:33 +0900
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
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From: "Tim O. Yenney"
<toyenney@URIEL.NET>
Subject: Re: Birthday's
MIME-Version: 1.0
Content-Type: multipart/alternative;
boundary="----=_NextPart_000_0015_01BE7ED0.59C606C0"
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Dear Tim: I opened but didn't have access to the sound on the
birthday =
card you sent Sarah. When we move back into our apartment later,
we'll =
try it again. Right now we're staying over at the DHL in room
517 till =
they get the water leak repaired above our TV room. The water
pipe(s) =
in apt # 3 broke and the water drained into our apartment last Sunday.
=
Between having migraine headaches for three days, and both Sarah and
Bea =
having diarrea, and a cold, Bea reached her stress maximum and our
=
landlord said he would put us up in a hotel. I don't know whether
I'll =
see you tomorrow night or not, it depends on what my computer instructor
=
assigns. I don't have Quick Basic on my computer here at home,
so I =
couldn't work on my assignment that he wanted us to do for tomorrow.
=
Hope you all have a most enjoyable Easter !!!! YBIC.
Tim
-----Original Message-----
From: Timothy Holt <tholt@WEBTV.NET>
To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM>
Date: Sunday, April 04, 1999 1:19 AM
Subject: Birthday's
=20
=20
HAPPY BIRTHDAY to:
~~ Teeter~~
~~
Lindsay~~
~~ Sarah~~
~~ Andrew~~
~~ Collin ~~
I hope you all have a wonderul day!
=20
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<META content=3D'"MSHTML 4.72.2106.6"' name=3DGENERATOR>
</HEAD>
<BODY bgColor=3D#ffffff>
<DIV><FONT color=3D#000000 size=3D2>Dear Tim: I opened
but didn't =
have access=20
to the sound on the birthday card you sent Sarah. When we
move =
back into=20
our apartment later, we'll try it again. Right now we're
staying =
over at=20
the DHL in room 517 till they get the water leak repaired above our
TV=20
room. The water pipe(s) in apt # 3 broke and the water drained
=
into our=20
apartment last Sunday. Between having migraine headaches
for three =
days,=20
and both Sarah and Bea having diarrea, and a cold, Bea reached her
=
stress=20
maximum and our landlord said he would put us up in a hotel.
I =
don't know=20
whether I'll see you tomorrow night or not, it depends on what my =
computer=20
instructor assigns. I don't have Quick Basic on my computer
here =
at home,=20
so I couldn't work on my assignment that he wanted us to do for =
tomorrow. =20
Hope you all have a most enjoyable Easter !!!! =
YBIC. =20
Tim</FONT></DIV>
<DIV> </DIV>
<BLOCKQUOTE=20
style=3D"BORDER-LEFT: #000000 solid 2px; MARGIN-LEFT: 5px; PADDING-LEFT:
=
5px">
<DIV><FONT face=3DArial size=3D2><B>-----Original
=
Message-----</B><BR><B>From:=20
</B>Timothy Holt <<A=20
href=3D"mailto:tholt@WEBTV.NET">tholt@WEBTV.NET</A>><BR><B>To:
=
</B><A=20
href=3D"mailto:APERT@LISTSERV.AOL.COM">APERT@LISTSERV.AOL.COM</A>
=
<<A=20
=
href=3D"mailto:APERT@LISTSERV.AOL.COM">APERT@LISTSERV.AOL.COM</A>><BR>=
<B>Date:=20
</B>Sunday, April 04, 1999 1:19 AM<BR><B>Subject:=20
</B>Birthday's<BR><BR></DIV></FONT>HAPPY
BIRTHDAY=20
=
to:<BR> =
~~=20
=
Teeter~~  =
; =
&=
nbsp; =20
=
~~<BR>Lindsay~~<BR> =
=20
~~ Sarah~~<BR>
~~=20
=
Andrew~~<BR> &=
nbsp; =20
~~ Collin ~~<BR>I hope you all have
a wonderul=20
day!<BR><BR></BLOCKQUOTE></BODY></HTML>
------=_NextPart_000_0015_01BE7ED0.59C606C0--
=========================================================================
Date: Sun, 4 Apr 1999
10:54:46 -0400
Reply-To: Information exchange and Internet
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Comments: RFC822 error: <W> Incorrect or
incomplete address field found and
ignored.
From: Andrea Gartner
<agartner@PEGANET.NET>
Subject: HAPPY BIRTHDAY & HAPPY EASTER
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
Content-Transfer-Encoding: 7bit
HAPPY BIRTHDAY TEETER, LINDSAY & COLLIN AND ALL THE OTHERS WHO'VE
HAD ONE.
I HOPE YOUR DAY IS FILLED WITH FUN AND HAPPINESS!
HAPPY EASTER & HAPPY SPRING EVERYONE. I HOPE EVERYONE HAS
A VERY HAPPY AND
SAFE EASTER! GOD BLESS YOU ALL,
WITH LOVE,
ANDREA
=========================================================================
Date: Sun, 4 Apr 1999
17:41:27 -0500
Reply-To: Information exchange and Internet
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Sender: Information exchange and
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From: "Niemi, Liz"
<Liz.Niemi@NMB.NORWEST.COM>
Subject: Re: toenails
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
I have been told so many times that having their toes separated is not
a
good idea. However, I've also been told that it would be BETTER
for Jake to
have them separated for his self-esteem. If we do have them separated,
is
he going to have major problems with them in the future? I've
heard their
toes can actually curl different ways after separation. Is this
true? I
suppose every situation is different. Jake will be seeing an
Orthopedic
surgeon in June for the first time. Any questions I should have
prepared
for him?
Liz Niemi
-----Original Message-----
From: Shirley
Tanner [SMTP:TANRANCH@AOL.COM]
Sent: Friday,
April 02, 1999 9:42 AM
To:
APERT@LISTSERV.AOL.COM
Subject:
Re: toenails
Hi Everyone,
Just thought I'd put my 2 cents in about toenails. Collin had
his toes
seperated when he had his
fingers seperated @ 11mos & 14 mos He was
in
bandages on all 4 (arms
& legs) but it didn't stop him from
anything. He
even learned to walk in
bandages!! I cut his toenails about once a
week,
after a bath while they
are soft, and so far haven't had any
problems. The
nails on the big toes tend
to curl up. He has one problem area where
caluses
(sp?) build up between 2
toes, but I cut what I can of it with
clippers too.
I have to buy wide shoes
for him but I think he would need wide
shoes even if
the toes had not been seperated.
Collin has pretty good balance--he
walks on
the balance beam at school
& doesn't fall off. We have no regrets
at having
them done and it really
wasn't too bad having hands & feet done all
wrapped
at the same time.
Got it over with early on!!
Take care,
Shirley Tanner
Hartford, Alabama
=========================================================================
Date: Sun, 4 Apr 1999
19:26:20 -0500
Reply-To: Information exchange and Internet
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and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
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From: Judy Amerman
<jamerman@UTI.COM>
Subject: St.Louis
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HI,
Nick and I just got back from visiting friends in St. Louis.
We took the train ther and back and Nick just made all kinds of new
=
friends.
We went to the Science Center there on Saturday and a very nice man
=
approached us while we were at the planet exhibit.
He has an 18 year old brother with apert's.
Unfortunately, I did not have a pen and paper on me, but I think the
=
brother's name is Dylan. He goes to college in San Antonio, Texas.=20
Of course, I told his brother about Teeter's page and gave him the =
address. So hopefully his memory is better than mine and the
18 year =
old will find us and join in our fun.
Hope you all had a great Easter! Nick sure did!
The Easter bunny snuck into our house while we were gone and he ven
=
found Nick in Missouri. Imagine that.
Nick is real happy with me. I got laryngitis yesterday so I cannot
=
raise my voice. Sure hope it comes back tomorrow.
Happy Birthday to all that are having birthday's!
Judy
jamerman@uti.com
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<HTML><HEAD>
<META content=3D"text/html; charset=3Diso-8859-1" =
http-equiv=3DContent-Type>
<META content=3D"MSHTML 5.00.2014.210" name=3DGENERATOR>
<STYLE></STYLE>
</HEAD>
<BODY bgColor=3D#ffffff>
<DIV><FONT face=3DArial size=3D2>HI,</FONT></DIV>
<DIV><FONT face=3DArial size=3D2>Nick and I just got back from
visiting =
friends in=20
St. Louis.</FONT></DIV>
<DIV><FONT face=3DArial size=3D2>We took the train ther and back
and =
Nick just made=20
all kinds of new friends.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>We went to the Science Center
there on =
Saturday and=20
a very nice man approached us while we were at the planet =
exhibit.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>He has an 18 year old brother
with=20
apert's.</FONT></DIV>
<DIV><FONT face=3DArial size=3D2>Unfortunately, I did not have
a pen and =
paper on=20
me, but I think the brother's name is Dylan. He goes to college
in =
San=20
Antonio, Texas. </FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>Of course, I told his brother
about =
Teeter's page=20
and gave him the address. So hopefully his memory is better
than =
mine and=20
the 18 year old will find us and join in our fun.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>Hope you all had a great Easter!
Nick =
sure=20
did!</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>The Easter bunny snuck into
our house =
while we were=20
gone and he ven found Nick in Missouri. Imagine that.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>Nick is real happy with me.
I got =
laryngitis=20
yesterday so I cannot raise my voice. Sure hope it comes
back=20
tomorrow.</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>Happy Birthday to all that are
having=20
birthday's!</FONT></DIV>
<DIV> </DIV>
<DIV><FONT face=3DArial size=3D2>Judy</FONT></DIV>
<DIV><FONT face=3DArial size=3D2><A=20
href=3D"mailto:jamerman@uti.com">jamerman@uti.com</A></FONT></DIV></BODY>=
</HTML>
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=========================================================================
Date: Sun, 4 Apr 1999
19:49:54 -0500
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
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From: Randy & Deb
Picht <rldpicht@INFO.STARPOINT.NET>
Subject: Re: toenails
MIME-Version: 1.0
Content-Type: text/plain; charset="iso-8859-1"
Content-Transfer-Encoding: 7bit
We have been told by our doctor in Rochester that separation of the
toes is
not necessary. Lisa can walk just fine. She also wears
sandels so there is
no purpose to it. If anyone asks about it we are straight forward
with them
and just say she was born that way and everyone accepts that.
Deb Picht (Lisa's mom)
-----Original Message-----
From: Niemi, Liz <Liz.Niemi@NMB.NORWEST.COM>
To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM>
Date: Sunday, April 04, 1999 5:42 PM
Subject: Re: toenails
>I have been told so many times that having their toes separated is
not a
>good idea. However, I've also been told that it would be BETTER
for Jake
to
>have them separated for his self-esteem. If we do have them
separated, is
>he going to have major problems with them in the future? I've
heard their
>toes can actually curl different ways after separation. Is this
true? I
>suppose every situation is different. Jake will be seeing an
Orthopedic
>surgeon in June for the first time. Any questions I should have
prepared
>for him?
>
>Liz Niemi
>
> -----Original Message-----
> From: Shirley
Tanner [SMTP:TANRANCH@AOL.COM]
> Sent: Friday,
April 02, 1999 9:42 AM
> To:
APERT@LISTSERV.AOL.COM
> Subject:
Re: toenails
>
> Hi Everyone,
>
Just thought I'd put my 2 cents in about toenails. Collin had
>his toes
> seperated when he had his
fingers seperated @ 11mos & 14 mos He
was
>in
> bandages on all 4 (arms
& legs) but it didn't stop him from
>anything. He
> even learned to walk in
bandages!! I cut his toenails about once a
>week,
> after a bath while they
are soft, and so far haven't had any
>problems. The
> nails on the big toes tend
to curl up. He has one problem area
where
>caluses
> (sp?) build up between
2 toes, but I cut what I can of it with
>clippers too.
> I have to buy wide shoes
for him but I think he would need wide
>shoes even if
> the toes had not been seperated.
Collin has pretty good
balance--he
>walks on
> the balance beam at school
& doesn't fall off. We have no regrets
>at having
> them done and it really
wasn't too bad having hands & feet done all
>wrapped
> at the same time.
Got it over with early on!!
>
> Take care,
> Shirley Tanner
> Hartford, Alabama
>
=========================================================================
Date: Sun, 4 Apr 1999
22:09:45 EDT
Reply-To: Information exchange and Internet
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Sender: Information exchange and
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From: CatnDon@AOL.COM
Subject: Greetings from the beach
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: 7bit
Hi everyone -
Coming to you almost live from beautiful Myrtle Beach. The weather
has been
great, in the 70s during the day, 50s at night. Cathie is already
toast from
not using sunscreen like I told her to. Teeter and I have spent
the days in
the pools and Cat has been nonstop shark tooth hunting on the beach,
getting
much deserved rest and relaxation.
I tried to pop us in to Apert Chat tonight but the browser on Cat's
laptop
wasn't cooperating. Oh well! Hope you all enjoyed it.
We're collecting local tourist magazines to send out to those of you
who are
interested. We're really getting excited about June!
Teeter had a fab birthday yesterday and Easter today. The Easter
bunny
managed to track us down, even here.
Having a wonderful time, wish you were here!!!
Love, Don, Cat, and Teeter
=========================================================================
Date: Mon, 5 Apr 1999
00:33:05 EDT
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From: Mary Bresnahan
<Munch35738@AOL.COM>
Subject: Fwd: Introduction
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This person is looking for info on craniosynostosis and I thought you
could
help out. I would appreciate it. Mary
--part1_98e3e489.24399701_boundary
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I am new to this list and we are dealing with cranialsynostenosis?
Has anyone had any experience with this?
Thanks,
Bren
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Date: Mon, 5 Apr 1999
11:38:14 -0400
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safe haven for Apert Syndrome
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From: Ryan Bradley
<Bradleys_r@COMPUSERVE.COM>
Subject: Re: toenails
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Hi Liz,
Our daughter Michelle is 8 years old and her toes have not been separated,
the doctor said that if it was a problem we will look into it but until
now
everything is fine, she jumps, runs fits on wide shoes.
Hoep this helps.
Martha
Algonquin, IL
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Date: Mon, 5 Apr 1999
14:38:15 -0500
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From: "Niemi, Liz"
<Liz.Niemi@NMB.NORWEST.COM>
Subject: Re: toenails
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Yes, it does! Thanks a lot!!
Liz
-----Original Message-----
From: Ryan Bradley
[SMTP:Bradleys_r@COMPUSERVE.COM]
Sent: Monday,
April 05, 1999 10:38 AM
To:
APERT@LISTSERV.AOL.COM
Subject:
Re: toenails
Hi Liz,
Our daughter Michelle is
8 years old and her toes have not been
separated,
the doctor said that if
it was a problem we will look into it but
until now
everything is fine, she
jumps, runs fits on wide shoes.
Hoep this helps.
Martha
Algonquin, IL
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Date: Mon, 5 Apr 1999
17:45:36 -0500
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From: "Niemi, Liz"
<Liz.Niemi@NMB.NORWEST.COM>
Subject: Re: Introduction
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Mary,
I would love to help her out, but since I do not subscribe to cleft-talk,
I
cannot send her a reply. Anyway she can e-mail us directly?
Liz Niemi
-----Original Message-----
From: Mary Bresnahan
[SMTP:Munch35738@AOL.COM]
Sent: Sunday,
April 04, 1999 11:33 PM
To:
APERT@LISTSERV.AOL.COM
Subject:
Fwd: Introduction
This person is looking for
info on craniosynostosis and I thought
you could
help out. I would
appreciate it. Mary << Message: Introduction >>
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Date: Mon, 5 Apr 1999
21:19:55 EDT
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From: Shirley Tanner
<TANRANCH@AOL.COM>
Subject: Re: Birthday wishes
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HAPPY BIRTHDAY SARAH!!! :)
SHIRLEY & COLLIN
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Date: Mon, 5 Apr 1999
21:32:34 EDT
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From: Shirley Tanner
<TANRANCH@AOL.COM>
Subject: Re: toenails
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Liz,
Wish I could give you more info about having
the toes seperated. I
don't think there was any medical reason for having Collins toes seperated.
His doctors thoughts were it would be better for his self esteem as
he gets
older if the feet looked more normal. So far they are doing fine. Although
he
does have 1 middle finger that is curving over the next.
Anyway, back to toes I think it
is a choice not a have to. Hope this
helps in your decision.
Good luck,
Shirley
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Date: Mon, 5 Apr 1999
23:40:06 EDT
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From: Lisa Guyette
<LAM1126@AOL.COM>
Subject: Toes
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We were told at our consultation for Samantha by the hand and feet
specialists, that we really shouldn't separate her toes. That
it requires
more skin graphing which she'll have enough of for her fingers. He
also
mentioned that toes don't heal as well as fingers and we could be hindering
her walking. I asked if she choose it later would it be a big
deal and he
said no. She can have it done when ever she likes. We have
chosen to not do
the surgery unless she has problems because of it. But if she
wants them
done then we will support that.
Lisa Guyette
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Date: Mon, 5 Apr 1999
23:19:39 -0500
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From: "Niemi, Liz"
<Liz.Niemi@NMB.NORWEST.COM>
Subject: Re: Toes
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Thanks Lisa. This is a tough decision. Jake has 5 fingers
on each hand and
is doing great with that. I guess we'll just wait to talk with
his
Orthopedic Surgeon before making any decisions.
Thanks so much for your reply!
Liz Niemi
-----Original Message-----
From: Lisa Guyette
[SMTP:LAM1126@AOL.COM]
Sent: Monday,
April 05, 1999 10:40 PM
To:
APERT@LISTSERV.AOL.COM
Subject:
Toes
We were told at our consultation
for Samantha by the hand and feet
specialists, that we really
shouldn't separate her toes. That it
requires
more skin graphing which
she'll have enough of for her fingers. He
also
mentioned that toes don't
heal as well as fingers and we could be
hindering
her walking. I asked
if she choose it later would it be a big deal
and he
said no. She can have
it done when ever she likes. We have chosen
to not do
the surgery unless she has
problems because of it. But if she wants
them
done then we will support
that.
Lisa Guyette
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Date: Mon, 5 Apr 1999
23:25:21 -0500
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From: "Niemi, Liz"
<Liz.Niemi@NMB.NORWEST.COM>
Subject: Re: toenails
MIME-Version: 1.0
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Thanks Shirley! Jake's toes look good now even though he
hasn't had them
separated. He has 5 toes, with bones and toenails. They're
just not
separated. He has 5 fingers on each han