Hello everyone! Daryl
will be having his forehead and brow
advancement on Thursday, Jan. 21. Please pray for a speedy recovery!
Glad to hear that Zoey is
home!!!! I know now you will need weeks
to catch up! I pray for her strength to continue to get better.
Christine, it is good to
hear from you too! We have been praying
for you and your family too!
I hope everyone is doing
well and and staying warm! Everyone here
keeps getting sick, but what do you expect when one day it is 60 degrees
and within 4 hours it is 28. This has happened for the last four
weeks.
God Bless everyone and keep us in your prayers, please!
Denise Graham
=========================================================================
Date: Fri, 15 Jan 1999
06:22:36 EST
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From: Liz Saylan <LSaylan@AOL.COM>
Subject: Re: ZOEY IS HOME!!!
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I am sorry I have not been sending emails lately! I transferred to new
publix
and I have been helping get it ready to open in a couple weeks. I am
so glad
to hear about zoey's recovery. I have been reading my emails and tonight
when
I get home will respond to as many of them as I can! Hope all is well
with
everyone!
Take Care !
Liz
=========================================================================
Date: Fri, 15 Jan 1999
08:02:38 EST
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From: Jenngram@AOL.COM
Subject: Re: Judy's unwelcome visitor
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Doors locked here too in Tampa, as we have many mid-day uninvited entries
in
the area...
Perhaps prying on our huge retired population that are home
I have been mostly lerking these past few weeks...we had visitors on
and off
for about a month...so if people were not here, I was cleaning and
getting
ready for the next round. Something about Fla. in hte winter amkes
everyone
want to escape the cold and come on down.
I have been keeping updated though and keeping everyone in our thoughts
and
prayers.
Jordan heads in 2/1 for the final finger release on the left hand...hopefully
it will go smoothly
Jenn(Tampa/St. Pete)
=========================================================================
Date: Fri, 15 Jan 1999
07:56:56 -0600
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From: Judy Amerman
<jamerman@UTI.COM>
Subject: Daryl's forehead and brow advancement
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Good luck on the 21st!
When Nick had his done, i was totally surprised at just how fast he
came
back to his smiling self. These kids just never cease to amaze
me!
In re: to my unwelcome visitor:
I have been pondering this for the last few days. I do not recall
opening
that door on Tuesday for any reason. I know that I used it the day
before.
I am just wondering if the dooor was really unlocked, but how else
would he
get in so fast. I have just been assuming that it was unlocked
because of
the speed in which he entered.
But I have learned my lesson. Always keep my doors locked
even in the day
whenI am home! Thanks to everyone who responded via listserv
and or
private!
Judy
=========================================================================
Date: Fri, 15 Jan 1999
09:27:07 EST
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From: Marilyn Williams
<Mbwill43@AOL.COM>
Subject: note
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Hi all so glad to hear Zoey got to go home blessed day that is for the
whole
family.
Andrea , will be thinking of you on the 13 of
may.HAPPY BIRTHDAY!!!!
will be praying for
all the upcoming surgeries. God bless to all. Marilyn, Carlee's grandma
=========================================================================
Date: Fri, 15 Jan 1999
10:48:49 EST
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From: Yonstein@AOL.COM
Subject: Re: Birthdays and Surgeries
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Hello All:
Glad to hear that Zoey is finally home. Now she can really enjoy
her birthday
on the 18th!!
Special birthday wishes to Carmen Rae on the 18th as well.
Happy belated birthday wishes to Andrea and Morgan.
Special prayers are being sent to the Harmon family and up to BJ on the 16th.
Good luck to Daryl on your surgery. Hope all goes well and you
have a speedy
recovery.
I, too, leave my door locked when I am home now during the day.
You just
never know what can happen.
As for the June vacation, we are trying to work it out also between
surgeries
and work and construction on the upstairs of the house. Sounds
like a great
place.
Best wishes,
Janine Krebs
=========================================================================
Date: Fri, 15 Jan 1999
12:25:01 +0000
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From: "J. G. Lindamood"
<chanan8@JUNO.COM>
Subject: Re: June
Hi there!
Here in Ohio, under 14+ inches of snow and ice, I'm home bound and loving
it! My mission today is to put to use the empty file cabinet
I bought
way back when. It's been a handy junk hider for when the company
comes,
but the files strewn from here to Never Never Land are getting on my
nerves!
I thought I would catch up with you all first. Lord only know
when I
will come up for some air once I start on the mound!
The more I hear about the June Event, the more I'm interested.
However,
I bleeped the information and don't have a clue where you all are going.
If someone can refresh my memory, I will give it some serious
consideration.
My doors are locked 24 - 7. I have a two story town house and
with my
hearing restrictions, I'm afraid someone can come in when I'm upstairs
without me hearing them. Coal is downstairs, but I don't know
if his
"Watch Dog" instincts would kick in or not. I'm really not sure
if he
has any!
Well, the time has come, no more avoiding it... it's to work I go on
this
project!
Hope all is well where you are.
Joanne
=========================================================================
Date: Fri, 15 Jan 1999
13:48:47 -0500
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From: Timothy Holt
<tholt@WEBTV.NET>
Subject: Hello everyone!
Content-Type: Text/Plain; Charset=US-ASCII
Content-Transfer-Encoding: 7Bit
MIME-Version: 1.0 (WebTV)
Lisa Guyette~
Hi! My name is Mechelle Holt. My daughter Courtney is 7 months
old, she
has apert. She was born June 3rd, 1998. She had her first
surgery on
Agust 26, 1998. This was a midface advancement, and they also
took part
of the front of her skull out. This was to give her brain room
to grow.
All of her sutures were fused. She could have suffered brain
damage,
headaches,vision loss, and many more difficulties. Here in our
hometown, we were told no surgeries until one year of age. She
was
missing her corpus collosum, the geneticist was afraid of her setting
up
hydrocholus(water on the brain), so they sent us to the nearest Baptist
Hospital (Winston Salem, Wake Forest University, also known as Bowman
Gray). There, we were old Courtney needs surgery right away.
We were
also told here in town, (which was supposed to be the best in Western
North Carolina) they needed to amputate a finger. I needed a
second
opinion, a finger is a lot to throw away! I went to "the place
that
works miracles" Shriner's. They said thank you for educating
me,
amputate a finger. Feeling that I had to be the educator, I couldn't
preform surgery on my daughter, so why should I feel confident they
could?? It was time for a third opinion, during our initial visitation
with the plastic surgeon who was to do the cranial surgery, I asked
him
about her fingers. He was the only doctor who did not do any
x-rays,
and said I can make her 5 functional fingers. After leaving his office,
we felt either he is conceeded, or he has a gift. After Courtney's
head
surgery, he done such a great job, the we knew he had a gift.
He was a
gift from above sent down to us. After Courtney's cranial surgery,
she
gained a bubbly personality within two weeks after surgery. She
cried
alot before surgery, we think she was in a lot of pain. The news
of
cranial surgery is definately devastating. But it has proven
to be a
gift for us. We are looking at another cranial surgery in early
summer.
Christine~
It is soooo good to hear that Zoey is home! We have been taking
the RSV
shots, but Courtney stay so congested. They keep retesting her
for the
virus.
Take Care!
Mechelle Holt address:tholt@webtv.net
=========================================================================
Date: Fri, 15 Jan 1999
15:29:13 -0500
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From: Don Sears <dsears@SCRS.STATE.SC.US>
Subject: FW: Myrtle Beach Vacation
MIME-Version: 1.0
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Here's the details of our upcoming summer plans, for those of you who
may have missed it:
> -----Original Message-----
> From: CatnDon@AOL.COM [SMTP:CatnDon@AOL.COM]
> Sent: Monday, December 14, 1998 9:38 PM
> To: APERT@LISTSERV.AOL.COM
> Subject: Myrtle Beach Vacation
>
> Hi everyone, this is Cathie (Teeter's mom). I know I never
write to
> the list,
> but I always read every letter that comes through. Judy Amerman
> (Nick's mom)
> keeps telling me to write, get involved, etc., but I just like
> lurking. I'm
> not much on writing, but I can sure talk your ear off on the phone
or
> face to
> face. Well, I'm finally writing, because we (Amerman's and
Sears')
> are going
> back to Myrtle Beach again this summer and we would love to have
each
> and
> everyone of you to join us. We are going to be there from June
9th -
> 18th.
> We will be staying at the Crown Reef Resort, which I think is the
best
> hotel
> in Myrtle Beach. (I have been going to Myrtle Beach since 1976
and
> Don has
> been going since 1960.) There is sooo much to see and do at
the
> beach. There
> are amusment parks, water parks, shopping, shopping and more shopping,
> dinner
> theatres, miles of beach, fishing piers, and hundreds of wonderful
> restaurants
> from dressy to all you can eat seafood. Plus if you like golf,
Myrtle
> Beach
> has some of the best courses on the east coast. Can't you tell
I LOVE
> Myrtle
> Beach. The hotel has 20+ swimming pools, full kitchens, and
wonderful
> oceanfront views off the private balcony. The rates run $130-$155
per
> night
> plus tax. There are times that Don, Teeter and I never move
our truck
> from
> the parking lot all week. I cook in the room and sometimes
go to the
> downstairs restaurant and get a $1.30 meal of 2 hotdogs, drink and
ice
> cream.
> Teeter calls it her hotel. Please visit Crown Reef's website
at
> www.crownreef.com to see more about it. Myrtle Beach also has
a web
> site at
> www.myrtlebeachlive.com Myrtle Beach has an airport
within 2 miles
> of the
> hotel. Please consider joining us this summer and starting
our own
> "family
> reunion".
> Much love to all and happy holidays,
> Cathie
=========================================================================
Date: Fri, 15 Jan 1999
20:00:59 -0800
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From: claudia salazar
<pcbaas@HOME.COM>
Organization: @Home Network
Subject: (no subject)
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Michelle,
Hooray for you, sticking to your gut feelings....It is a miracle what
they can do...was Courtney hydocephalus? It is so nice when they
are
able to be the happy babies they were intended to be....Did they put
in
a shunt? Allie has one and when it doesnt work...she has one
terrific
head ache. Thank goodness it has worked well after the first year...
Continued success on your next surgery.
Claudia and Allie
=========================================================================
Date: Sat, 16 Jan 1999
03:27:50 -0500
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From: baconsmith <bluenose@TELUSPLANET.NET>
Subject: Re: ZOEY IS HOME!!!
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Hey, Zoey and Christina and Tia! Hugs to all of you! What
great news.
Pat
=========================================================================
Date: Sat, 16 Jan 1999
13:30:11 EST
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From: Marilyn Williams
<Mbwill43@AOL.COM>
Subject: Re: note
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Joanne where in Ohio do you hail from? I'm from west Famington , Cortland
,
Warren areas. marilyn Carlee's gram
=========================================================================
Date: Sat, 16 Jan 1999
13:05:31 -0600
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From: sbc <sbc@COMWARES.NET>
MIME-Version: 1.0
Content-Type: multipart/alternative;
boundary="----=_NextPart_000_000A_01BE4150.E53816C0"
This is a multi-part message in MIME format.
------=_NextPart_000_000A_01BE4150.E53816C0
Content-Type: text/plain;
charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable
Hi my name is Stephannie Tingley I have a daughter 8 months old wiht
=
apert syndrome. Her name is Carroline Tingley. She was
born on May 20, =
1998 and had her first cranial on October 30, 1998. Everything
went =
great! We live in Chrisman Illinois and Carroline has a older
sister =
named Taylor she is 6 and a big helper. My husbands name is Tim
he is a =
wonderful father and helper. Carroline is getting ready for her
first =
hand surgery on January 27, 1999 she has type 1 hands. We also
found =
out on December 14th at her 6 week post-op that she is not hearing,
thy =
said she has fluid behind her ear drum so during her hand surgery they
=
our going to put tubs in. I hope that takes care of the problem.
I =
really want her to be able to hear. I am on the listserv where
I work =
my E-Mail address is sbc@comwares.net. well i better get home
talk to =
you later. =20
------=_NextPart_000_000A_01BE4150.E53816C0
Content-Type: text/html;
charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable
<!DOCTYPE HTML PUBLIC "-//W3C//DTD W3 HTML//EN">
<HTML>
<HEAD>
<META content=3Dtext/html;charset=3Diso-8859-1 =
http-equiv=3DContent-Type>
<META content=3D'"MSHTML 4.72.3110.7"' name=3DGENERATOR>
</HEAD>
<BODY bgColor=3D#ffffff>
<DIV><FONT color=3D#000000 size=3D2>Hi my name is Stephannie
Tingley I =
have a=20
daughter 8 months old wiht apert syndrome. Her name is Carroline=20
Tingley. She was born on May 20, 1998 and had her first cranial
on =
October=20
30, 1998. Everything went great! We live in Chrisman
=
Illinois and=20
Carroline has a older sister named Taylor she is 6 and a big =
helper. My=20
husbands name is Tim he is a wonderful father and helper.
=
Carroline is=20
getting ready for her first hand surgery on January 27, 1999 she has
=
type 1=20
hands. We also found out on December 14th at her 6 week post-op
=
that she=20
is not hearing, thy said she has fluid behind her ear drum so during
her =
hand=20
surgery they our going to put tubs in. I hope that takes
care of =
the=20
problem. I really want her to be able to hear.
I am on the =
listserv=20
where I work my E-Mail address is <A=20
href=3D"mailto:sbc@comwares.net">sbc@comwares.net</A>.
well i =
better get=20
home talk to you later. </FONT></DIV></BODY></HTML>
------=_NextPart_000_000A_01BE4150.E53816C0--
=========================================================================
Date: Sat, 16 Jan 1999
20:36:41 EST
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From: GSieb91515@AOL.COM
Subject: Re: daryl's surgery
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We will certainly keep Daryl in our prayers as his surgery approaches
on the
21st.
Also, Happy Birthday to Zoey and Carmen Rae on Monday. We are
so glad to here
that Zoey is home with her family again.
Jenn- Glad to hear from you. Was wondering where you have been.
Good luck on
the 1st. We are right behind you on 3/1 for our last digit release
on the
right hand.
We may also do an eye muscle surgery at the same time but haven't made
that
decision yet.
Best wishes to everyone.
Brenda
Houston
=========================================================================
Date: Sat, 16 Jan 1999
22:25:05 +0000
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From: "J. G. Lindamood"
<chanan8@JUNO.COM>
Subject: Re: note
Hello Marilyn a.k.a Carlee's gram,
I live in Springfield right now. It's 45 minutes north of Dayton
and an
hour west of Columbus. I grew up in Medway and New Carlisle area.
I'll
have to whip out my handy dandy map to find West Famington , Cortland
,Warren areas. I fail miserably in geography which is a joke in my
family
as my father and both brothers are pilots. Oh well, the three
of them
working together couldn't write like I can! Where are you now?
My interest in the June Event vanished into thin air when I read the
prices for the rooms. ouch. I would be lucky to make it
for one night!
Maybe next year?
Hey! There really is a world out there under the snow! It's
melting!
This, from the one who whined about the lack of snow last year!!!
We
went from one extreme to the other!
Joanne
=========================================================================
Date: Sun, 17 Jan 1999
00:13:58 -0500
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From: Timothy Holt
<tholt@WEBTV.NET>
Subject: Surgery
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MIME-Version: 1.0 (WebTV)
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Hope everyone is doing well!
Claudia~
We were lucky that Courtney doesn't have a shunt, nor water
on the
brain.
However we met a family in Hickory, N.C. whose 10 year old son (with
Apert) has a shunt. He has had 30 surgeries to date. It
was to our
understanding these children don't require any cranial surgery after
age
six. However this person is having a steel plate inserted due
to the
headaches on February 17th. His parents have made it known that
most of
his surgeries were due to the shunt malfunctioning. Thank you for the
praise, but I like the rest of you I am the only advocate for my child.
I feel like some health care providers see my child as money
making
oppertunity. After being discharged from the hospital (NICU),
we had 15
follow up appointments, which were for specialist who said there is
not a problem, but we want to see you in one week. Does/did anyone
else
feel this way?? Or could I just have been vulnerable at the moment?
Does anyone know of cranial surgeries after six years of age if they
have been done prior to one year of age? Am I misinformed?
Thank you for all the support, help, and prayers.
Tim & Mechelle Holt address:tholt@webtv.net
=========================================================================
Date: Sun, 17 Jan 1999
07:31:42 EST
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From: BBarn60368@AOL.COM
Subject: Re: Surgery
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Dear Timothy and Mechelle:
I think you just are misunderstanding or are just not getting all the
info at
the same time. Most of the kids are born with some or all of
their sutures in
the skull fused. Kids are supposed to have open areas in the
skull at birth
so the skull can expand to accommodate the rapid growth of the brain.
Therefore, the immediate surgery is to create soft spots in the skull
to allow
it to give and the brain to grow.
Also, another problem associated with Apert is the immaturity of the
mid-face.
As the rest of the face grows at a natural rate, the mid-face area
does not.
Therefore, the mid-face has to be brought out surgically to match the
rest of
the face as it grows. So both surgeries are necessary to correct
entirely
different problems.
The controversy is in the age the mid-face surgery is done. Some
doctors
recommend starting at 5 or 6 and some recommend waiting until later.
I
believe the earlier they start the more surgery is needed because the
face
continues to grow and the surgery has to be done over and over to keep
catching the mid-face up.
This is all my understanding of things. Hope it helps. I
invite information
from the rest of you if you feel my understanding is incorrect.
Alice in Orlando, Florida
=========================================================================
Date: Sun, 17 Jan 1999
08:25:59 EST
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From: Jenngram@AOL.COM
Subject: Re: Surgery
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Our plastic surgeon told us that after Jordans mid-face at around
6 yrs. the
only facial/cosmetic surgery would be when he was an adult and finished
growing. That would be to basically tidy everything up....finish dental
work
and any changes that had occured during pre-pubescent growth spurts.
Of course
by this time he will be old enough the make the decision on his own.
Daryl and The Grahams are in our prayers for Thursdays surgeries. Remember
by
this time next week it will all be over.
Glad to hear Zoey is home and recovering well.
AS much as I would love to go to the summer shin-dig, it looks like
we will be
moving in June....either Augusta, Georgia or to Columbus, Ohio.
We'll know
for sure which position Joe gets in March. So the only vacation we
will get is
the one following the moving van!
Joanne gald you are thawing out up there.....the thought of all that
snow
again scares me to death!!!!
Hope everyone else is doing well
Jenn(Tampa/St. Pete)
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Date: Sun, 17 Jan 1999
10:12:36 EST
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From: BBarn60368@AOL.COM
Subject: Re: June Vacation
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The South Carolinians:
The Myrtle Beach trip sounds great. Bill (my husband) and I are
in the
process of discussing it now. I hate to see people decide not
to go, due to
the price of the hotel recommended. Could some of you, who are
familiar with
the area, let everyone else know some alternatives that might be a
little
cheaper? We don't all have to stay in the same hotel, to get
together.
Thanks in advance,
Alice in Orlando, Florida
=========================================================================
Date: Sun, 17 Jan 1999
14:01:22 -0500
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From: Rich Thornquist
<rlthorn@EARTHLINK.NET>
Subject: Long time no talk!!
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Hello to all my friends!!!
Lynn Thornquist here! I have had to just lurk lately because we
bought
a new computer and the e-mail wasn't working. My husband finally
figured it out (good thing he can use the computer, because I can't).
I
have also not been feeling very good these past few weeks. Actually
it
all started 2 weeks before Christmas.
I want to wish everyone who is going for surgery good luck and I will
keep you in my prayers during all surgeries.
I'm going to answer a few e-mails all in one message.
Christine - I'm glad to hear that your doing well after all the
radiation therapy. I also want to tell you that my grandmother
lived
fifty more years after her breast was removed. I am thinking
of you
daily and keep you in my prayers. Keep us posted!
Andrea - CONGRATULATIONS on your Associates Degree. Isn't it a
great
feeling when you finally accomplish something you have worked so hard
for? I know that the surgery in May was one you were debating,
but I'm
sure that you you will be happy with your decision when all is said
and
done. HAPPY BIRTHDAY!!!
So glad to hear that Zoey is home and recuperating with her family.
That is the best place to get back to normal. Andrew always did
much
better and bounced back quicker at home. I actually think I could
see
the elation in his face as we left the front lobby of the hospital.
Zoey is definatley a trooper (but aren't all our kids).
Judy - We also keep our doors locked 24/7. We just moved into
our house
this past August. We live on a one-way street with only a few
houses,
but still feel safer with all doors locked. I can actually say
that
when the windows are shut, they are also locked. (I even lock the 2nd
floor windows..... you never know) A couple of weeks ago, we
adopted a
dog from a local shelter, and she would have been great if she had
just
gotten along with the cats. Andrew was very sad to see her go.
With
the dog around, there was no way that anyone would ever get past her.
She was extremely protective, which could also have posed a problem
in
the long run. But inevitably it was the chasing of the cats that
made
her go back. We will get another dog some day soon.
Not much as been going on here, besides the fact that we are preparing
for another baby in the house. I am in my sixth month now and
it has
been a very miserable pregnancy so far. Does anyone have any
suggestions for constipation? I have tried everything from "p"
fruits
(prune juice made me throw up) to fiber therapy. We didn't have
any
drastic testing done, because it didn't really matter if the baby had
any disability, so why take the added risk of an amnio. We did,
however, have a 3-D ultrasound and the pictures from that are
incredible. It is like actually seeing my newborn baby's face.
You see
eye lids, lips and nose. They were also able to put color into
it and
we could see how the umbilical cord was working. The machine
could also
let us hear and see the heartbeat at the same time. Just an amazing
experience. We found out that the baby does not have Apert, and
we even
saw all fingers. She (yes, we are having a girl) was sucking
her thumb,
which is something Andrew was not able to do.
I do have some questions I need help with. First, Andrew is going
to be
2 1/2 in a couple of months and I want to know when we should start
seeing a dentist. We have already seen a specialist in the hospital,
but I mean a regular dentist (for cleanings and such). I don't
want
this dentist to do anything but cleaning. No x-rays, so teeth
removal.
That will all be done in the hospital. How do I explain that
to
him/her? What have you all done about this? My other problem
is Andrew
sleeping. We have stopped the bottle in the middle of the night,
but it
has been 2 weeks and he is still not going back to sleep by himself.
Sometimes he needs mommy and goes right back to sleep, other times
he
will cry himself back to sleep, but the worst is when he screams for
"juice" for almost an hour. We have a nighttime ritual now and
that
seems to be working, but this nighttime is awful. I hate listening
to
him scream. It breaks my heart. And I refuse to use ear
plugs because
then I wouldn't be able to hear if something truly was wrong.
HELP!!!!!
As far as the "ear candles", I have never heard of them. They
sound
wonderful, because I am always going to see Andrew's pediatrician to
clean wax out. My only problem is, Andrew would never sit still.
He
won't even sit still for something as simple as vaseline on his lips.
Sorry this was so long, but it has been a long time. I will be
more
attentive now that my e-mail is finally working. Talk to you
all later.
Lynn
rlthorn@earthlink.net
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<html>
Hello to all my friends!!!
<p>Lynn Thornquist here! I have had to just lurk lately
because we
bought a new computer and the e-mail wasn't working. My husband
finally
figured it out (good thing he can use the computer, because I can't).
I have also not been feeling very good these past few weeks.
Actually
it all started 2 weeks before Christmas.
<p>I want to wish everyone who is going for surgery good luck and
I will
keep you in my prayers during all surgeries.
<p>I'm going to answer a few e-mails all in one message.
<p><u>Christine</u> - I'm glad to hear that your doing well
after all the
radiation therapy. I also want to tell you that my grandmother
lived
fifty more years after her breast was removed. I am thinking
of you
daily and keep you in my prayers. Keep us posted!
<p><u>Andrea</u> - CONGRATULATIONS on your Associates Degree.
Isn't
it a great feeling when you finally accomplish something you have worked
so hard for? I know that the surgery in May was one you were
debating,
but I'm sure that you you will be happy with your decision when all
is
said and done. HAPPY BIRTHDAY!!!
<p>So glad to hear that Zoey is home and recuperating with her family.
That is the best place to get back to normal. Andrew always
did much
better and bounced back quicker at home. I actually think
I could
see the elation in his face as we left the front lobby of the hospital.
Zoey is definatley a trooper (but aren't all our kids).
<p><u>Judy</u> - We also keep our doors locked 24/7.
We just moved
into our house this past August. We live on a one-way street
with
only a few houses, but still feel safer with all doors locked.
I
can actually say that when the windows are shut, they are also locked.
(I even lock the 2nd floor windows..... you never know) A
couple
of weeks ago, we adopted a dog from a local shelter, and she would
have
been great if she had just gotten along with the cats. Andrew
was
very sad to see her go. With the dog around, there was no
way that
anyone would ever get past her. She was extremely protective,
which
could also have posed a problem in the long run. But inevitably
it
was the chasing of the cats that made her go back. We will
get another
dog some day soon.
<p>Not much as been going on here, besides the fact that we are
preparing
for another baby in the house. I am in my sixth month now
and it
has been a very miserable pregnancy so far. Does anyone have
any
suggestions for constipation? I have tried everything from
"p" fruits
(prune juice made me throw up) to fiber therapy. We didn't
have any
drastic testing done, because it didn't really matter if the baby had
any
disability, so why take the added risk of an amnio. We did,
however,
have a 3-D ultrasound and the pictures from that are incredible.
It is like actually seeing my newborn baby's face. You see
eye lids,
lips and nose. They were also able to put color into it and
we could
see how the umbilical cord was working. The machine could
also let
us hear and see the heartbeat at the same time. Just an amazing
experience.
We found out that the baby does not have Apert, and we even saw all
fingers.
She (yes, we are having a girl) was sucking her thumb, which is something
Andrew was not able to do.
<p>I do have some questions I need help with. First, Andrew
is going
to be 2 1/2 in a couple of months and I want to know when we should
start
seeing a dentist. We have already seen a specialist in the
hospital,
but I mean a regular dentist (for cleanings and such). I
don't want
this dentist to do anything but cleaning. No x-rays, so teeth
removal.
That will all be done in the hospital. How do I explain that
to him/her?
What have you all done about this? My other problem is Andrew
sleeping.
We have stopped the bottle in the middle of the night, but it has been
2 weeks and he is still not going back to sleep by himself.
Sometimes
he needs mommy and goes right back to sleep, other times he will cry
himself
back to sleep, but the worst is when he screams for "juice" for almost
an hour. We have a nighttime ritual now and that seems to
be working,
but this nighttime is awful. I hate listening to him scream.
It breaks my heart. And I refuse to use ear plugs because
then I
wouldn't be able to hear if something truly was wrong. HELP!!!!!
<p>As far as the "ear candles", I have never heard of them.
They
sound wonderful, because I am always going to see Andrew's pediatrician
to clean wax out. My only problem is, Andrew would never
sit still.
He won't even sit still for something as simple as vaseline on his
lips.
<p>Sorry this was so long, but it has been a long time.
I will be
more attentive now that my e-mail is finally working. Talk
to you
all later.
<p>Lynn
<br>rlthorn@earthlink.net</html>
--------------0120B1D2FA0FA08B92F76BC4--
=========================================================================
Date: Sun, 17 Jan 1999
17:53:42 EST
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From: BBarn60368@AOL.COM
Subject: Re: Long time no talk!!
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Lynn,
Shirley's plastic surgeon recommended going to the dentist right away.
I
think Shirley only had 2 teeth at the time. The dentist agreed.
He said the
sooner she gets used to him the better. She is 5 now and has
been going
regularly ever since. She also, at about 2, needed a lot of dental
work done
and her dentist put her in the hospital for it. He filled a lot
of her teeth,
did 2 root canals, cleaned them good and did a fluoride treatment.
By the way,
are bad teeth a part of Apert or was Shirley just lucky? She
may have just
gotten it from me. I think all of my teeth are filled.
As far as the bottle, I can't help you there. I let Shirley go
to bed with
her bottle until she was 4. I just couldn't take it away from
her. Talk
about a big chicken! I did the same thing about potty training
her. She
finally went to spend a few days with my sister, during the summer,
and came
back off the bottle and potty trained, too. I was just a wimp.
I just felt
her life was painful enough.
Alice in Orlando, Florida
=========================================================================
Date: Sun, 17 Jan 1999
20:26:54 +0000
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Comments: Authenticated sender is <jgibson2@POP.erols.com>
From: jgibson2@EROLS.COM
Subject: Re: Long time no talk!!
In-Reply-To: <36A23382.5391BF8D@earthlink.net>
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Lynn,
THE ultimate solution for constipation is to drink water
until you
think you are going to drown. Fiber helps, but only if it's
sufficiently wet. Coffee, tea, and sodas with caffeine don't
help,
since they act as diuretics. You need to drink water or fruit
juice.
One other possibility. Some people with lactose intolerance
get
constipated. You might try lactose reduced dairy products or Lactaid
tablets.
Judy
Judy Gibson
jgibson2@erols.com
=========================================================================
Date: Sun, 17 Jan 1999
17:42:25 -0800
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From: rreed <rreed@CABLEONE.NET>
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Hi Everybody, My name is Maxine Reed and I have Aperts. I'm 44 years
old,married and have a healthy 15 year old who's going on 20! I have
just
joined the Listserv. family and so far have enjoyed reading everybodys
letters. I thought I would write everybody and tell you a little about
me.
Like I said Iam married to a wonderfull man who is also handicapped
with
cerebal palsy, but we don't concider ourselves handicapped because
we can do
everything there is to survive and raise a healthy daughter in this
crazy
mixed up world. I also have a strong surport system of parents, a older
sister and a older brother. and a lot of friends and church friends.
I can
write, type, tie my own shoes, play the piano, cook and just about
anything
else there is to do as a mother and wife. As I told you Iam the baby
of the
family but I wasn't spoiled. When I was born (which was in 1954) the
doctor
told my parents that I wouldn't be able to talk or walk and the best
thing
to do with me is to put me in an institution. But because the institutions
were full at the time and I started doing all the things that so called
normal baby's were doing and because my sister and brother wanted to
keep
me,my parents decided to keep me. So here I am now living a very normal
life. My parents decided at the very begining that I would be treated
just
like my so called normal sister and brother. So I was. I got the same
treatment as anybody. Even when I got to be a rebel and moved out on
own, my
parents let me do it. But they were always there when I needed them
and they
still are. Iam so glad there is this web sit for all you young parents
with
aperts babys, and if theres any questions I can help you with, I'll
be happy
to try and anwser them. I know that when I was little and until I was
16 I
think I had most of my hands and feet surgery done at Shiners Hospital
in
San Francisco, Calif. That was my home away from home for many years.
I had
my facial surgery when I was 21 years old. I have sent some pictures
of my
family and I and one of my daughter and I that was taken this year.
The
family picture was taken 2 years ago. This year my husband didn't want
his
taken, so it was just the two of us.I will try and find my high school
picture before I had surgery and a picture of just me after so you
can see
the difference. Well I better close. There's just one thing I like
to say
and that is Please treat your kids like any other so called normal
kid and
just like them be their happy selves. They will be better for it. Oh
If
there's any adults out there with aperts I would like to hear from
you too.
I always said that I wanted to write a book about my life so I can
help
other Aperts familys. It looks like I have, but then I think I might
add
more. Well gota go. Happiness with a smile Maxine
=========================================================================
Date: Sun, 17 Jan 1999
21:38:48 EST
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From: Marilyn Williams
<Mbwill43@AOL.COM>
Subject: Re: note
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Hi Joanne, I live in north Florida just south of Jacksonville about
50 miles
nice warm day today . my home town is about 75 miles southeast of Cleveland
I
think that's the right direction ha ha , in that area ahow. hope your
weather
warms up . I know what you mean about the price of the rooms in Myrtle
Bch. A
little high for me .Cristy would love to go will wait and see. take
care
Marilyn
=========================================================================
Date: Sun, 17 Jan 1999
20:32:52 -0600
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From: "MARK E. DUBAS"
<Murphy@PLATTEVALLEY.NET>
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Hello Everyone..
My name is Mark Dubas, I'm 35 years old, and I was
born with Aperts.
I was born on Jan.17, 1964
I have been "lurking" for about a month, holding out until I
recieved my records from my parents, as we decided when we recieved them,
they would hold on to them.
I was born in a small hospital, the doctor had never seen an
aperts child, so he referred my parents to a pediatrition. (sp?) Upon his
retirement, we were sent all the records he kept of me, my last time seeing
him being in 1988.
At birth, my fingers and thumbs were grown together,the
bones being fused at the knuckles, as were my toes, Dr. Bosley commented
in his notes "it was not necessary to create artificial sutures".He said
I appeared to be healthy, tho he questioned whether I'd ever sit up on
my own.
In Oct ' 65 the first of two surgeries were done
to my right hand, seperating the fingers and thumb.The second surgery was
in April ' 67, they deepened the webs between fingers and thumb. I have
three fingers and thumb on right hand.They took skin grafts from my right
leg.
April 1966 the first of three surgeries was performed on my
left hand, to seperate the fingers and thumb, skin grafts were taken from
my left leg. A month later, when dressing was changed, they found the grafts
had not taken very well,had developed "dry gangrene." At that point, they
removed the tips of two fingers, and deepened the webs of all of them slightly.At
that time, I had three fingers and a thumb on the left hand, one finger
having two bones at it's base.It was removed at a later date, as of yet
I don't see anything in the records as to when.If I were to guess...I'd
say probably three years later.They thought I'd have better use of the
hand as in grasping an object.They also wanted to remove the index finger
of my right hand, but decided against it.
In ' 72 I had an extra bone that was protruding out the bottom
of each foot removed.
My skull is a little taller than "normal", and I have a curved
spine, I also have sleep apnia, and as a teen had bad acne,and many ear
infections as a child.
I was raised on a farm, dad quit because of the economy in Feb.'
82. We stayed on the farm, until I left for college,my parents moved to
town in January the following year.
I graduated high school in 1982, went to a two year college,failed
a class that never was made up, so I'm just short of an associates degree
in agriculture.At this time, I have no plans to make it up,as the economy
is especially hard for the farmers, and I have a successful and happy career
going.I am a janitor at a manufactureing plant, May of '99 will be my 11th
anniversary there.Two years ago, I purchased a house.I have taken
in four cats, that I dearly love.
I feel very lucky, as my health has been real good, except for
a time or two having pnemonia, and once having chicken pox, I have never
had a serious illness.I just went thru '98 without missing a day
due to illness from work, I missed two days in '97 or elese I'd have a
three year streak going.
At this point, I am a single person, having no plans for marriage.
I'm not much of a writer, as in writing very often, but I'll
answer any questions asked.
I think everything is covered...So I will close.
Mark E. Dubas
=========================================================================
Date: Sun, 17 Jan 1999
22:45:47 +0000
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From: "J. G. Lindamood"
<chanan8@JUNO.COM>
Hello Maxine and Mark!
And Welcome to the Family! My name is Joanne, I'm 33+ and have
Apert's.
I have had five surgeries dealing directly with Apert's. The
first, at
one week old was to open up my skull. The other four were to
develop
thumbs on both hands. The other fingers and all of my toes remain
fused.
I'm a single parent of a Parrot named Coal. He's my life
and joy. I'll
spare you the parental bragging for now. I am on my own and love
it!
Back in March I finally discovered my calling in life and became a
activity coordinator in a hospital on the Skilled Nursing Unit.
I
basically help the patients pass the time in a pleasant way, as opposed
to the medical and therapy treatments. I am taking a course to
become an
Activity Director, which means more $$!
It sounds like we have traveled down similar roads. It's nice
to have
someone to share with!
JENN GRAHAM: I'M VOTING FOR COLUMBUS!!!! :-)
Marilyn, yes, Warren is up around Cleveland. The atlas program on my
computer didn't indicate the other two smaller cities, but Warren showed
up. Nice to know a fellow Ohioan.
Joanne, the snow is almost gone!
=========================================================================
Date: Sun, 17 Jan 1999
23:05:09 -0500
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From: Gary Puleio <p8896@ALLTEL.NET>
Subject: Meeting
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I am like Cathy Sears--- I read everything but seldom write. I
read about
the person from Cortland or Farmington Ohio. We are from Conneaut
Lake, PA
and visit Eastwood Mall fairly often. We really enjoy eatting
at the
Outback and son Donald age 7 with Apert's loves Toys r Us. If ever
you
woould like to meet us we would gladly do that. Linda Puleio
p8896@alltel.net
=========================================================================
Date: Mon, 18 Jan 1999
09:32:59 -0500
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From: rhartley@DZIS.COM
Subject: Welcome to Maxine.
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Dear Maxine & Family,
Welcome. I am also a relative newcomer. Rich & Karen Hartley
with Alex 4 and Andrew 8 months with Apert. This is a great
group of friends to ask and give information and also to share
ideas.
Regards,
Rich Hartley, PA.
(610)975-6938 W.
(610)275-2401 H.
=========================================================================
Date: Mon, 18 Jan 1999
18:26:17 EST
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Maxine and Mark:
Welcome to the family! I just love hearing from you adults with
Apert. What
an inspiration you two are to us and our children! I don't think
either of
you mentioned where you live. In which state/country do you reside?
Also, could you tell us about your elementary school years? It
seems to me
that people tend to expect a lot less of Shirley (my 5 year old with
Apert)
than she is capable of. Did you experience this? Her teachers,
administrators, and day care personnel keep wanting to hold her in
younger
programs or classes. It drives me crazy.
Maxine, you mentioned that you sent pictures. Where to?
I checked the
clubhouse and found nothing.
Welcome again and thank you so much for opening your lives to us.
Alice in Orlando, Florida
=========================================================================
Date: Mon, 18 Jan 1999
19:19:43 EST
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From: Shirley Tanner
<TANRANCH@AOL.COM>
Subject: Re: Welcome
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Mark & Maxine,
Welcome to the listserv! My name is Shirley
Tanner with son Collin, 6-1/2
yrs old with Apert. We live in southeast Alabama.
I mostly lurk & read the email regularly to keep up. It is a great
place & a
wealth of information. Thanks to you both for sharing.
Shirley Larry & Collin, Hartford, AL
=========================================================================
Date: Mon, 18 Jan 1999
18:01:42 -0800
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From: rreed <rreed@CABLEONE.NET>
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Hi everybody,
I thought I would answer some guestions that
were sent to me. To Alice
in Orlando,Fl. I live in sunny Calif. in a town (whoops that's a city.
My
daughter says we live in a city now. I guess I have lived here so long
that
I think of it still a town)of Modesto. My elementry school years were
some
happy and some not so happy. I spent most of my elementry years in
different
grammer schools because not all of the schools had special Ed. classes.
But
I don't ever remember anyone thinking I was very smart or that I
could do
anything. But there were a small group of teachers that I did had who
could
see that I can do things. And I think it helped that my mom was a teacher
to
had she worked with me at home. We had this saying at home and I still
use
it to this day, and that is there is no such word as can't, no matter
what I
was trying to do or how hard I struggle to do something I keep telling
myself that I can do it with the help of the Lord. My mom still tells
me I
can do anything I put mymind to, and my husband says when I set my
mind in
to doing something,know matter how hard it is, theres no stopping me
from
doing it. so if your daughter shows progress in her school and she
wants do
things that the other children are doing. Let her do it. I don't know
what
to tell you about the teachers. I sent pictures to Don Sears. I sent
them
through the mail so they might of got lost. I did that that way because
I'm
not sure how to send them over the enternet yet,Iam still learning
the
computer. So talk to Don Sears about my pictures.
To Dori, Give Seth sometime getting use to his now look
it;ll grow on him
especially when he gets older like in his teen years. It's just hard
for him
right now, his at that age when his not sure what he likes( don't you
remember when you where 8 and you weren't sure what you liked. Or that
you
were at a point that you were to old for hugs in front of your friends
but
not to old for your mom and dad hugs. Maybe thats all he's going through
he
just needs time to get used to his new face. So maybe don't make over
his
new looks so much. I know that when I had my new face(I was much older
though 21) I didn't think I looked that much different, but every body
said
I did. And it wasn't until I looked at my high school gradution picture
and
my new pictures that I saw the change and liked what I saw. So give
him time
he'll come around.I saw Seth pictures. There Great!
To Beth, Hi it looks like we have the same interest, like
you I like
taking pictures, I like going for walks with my hubby or alone on the
beach
when ever I can get over to the beach, and I like to travel. I did
a lot of
traveling with my family when I was younger and living at home. I would
love
to go to that South Carolina trip. But I don't think I can make it.
My
travling days ended I stopped working and had a baby who's now a teenager
going on 20! The last time I went back east was 5 years ago when
my mom and
dad renewd their wedding vows after 50 years of marrige. My sister,
mom,
Dad,my daughter and I all went back to North Carolina to the same church
and
saw their house that they lived in while my dad was in the service.It
was
alot of fun. and we saw alot of nice people. Like you Beth I like playing
and writting on the computer and also like you I was once a aide. But
I was
a teachers aide for a mental retarded school. I quit because I had
Sarah and
I didn't go back to work because I felt Sarah needed a stay at home
mom, and
I felt she needed to have me around because I felt that he would be
hard on
her having two handicapped parents.
Hi Joanne it was nice hearing from you. Yes
it is nice having someome
to share with but it looks like I'll have to write more later because
my
hubby wants me to get dinner ready and spend a little time with him
and my
daughter. Good for you on becoming a activitts director. I hope you
get it.
I'll be praying for all the little ones who have up and comming surgerys
and
for the parents who have to go through the agoney of waitting. It was
hard
on my parents and family and Iam sure it's hard for you. So some prayers
go
out to you. Take care, everybody. Happiness always Maxine Reed
=========================================================================
Date: Mon, 18 Jan 1999
20:27:27 -0800
Reply-To: Information exchange and Internet
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From: claudia salazar
<pcbaas@HOME.COM>
Organization: @Home Network
Subject: Cranial Surgeries,
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Hi Everyone,
Welcome to Mark and Maxine, it is so warming to know there are adults
with similiar circumstances and that you have adjusted well in society.
Look forward to hearing from both of you.
Mechelle,
Allie had 3 major reconstruction cranial surgeries along with 7 other
types of surgeries the first year (Shunt placement and revisions,
malrotation of the intestines, eye surgery etc.) At age 7 her
forehead
was reconstructed then approximately 6mos later they did the Le Fort
and
brought her midface forward....There are plans to have her more cranial
surgery in her early teens. We are just beginning the orthodontia
work.
She had a "cloverleaf" shaped head at birth. All sutures were
fused.
Each case depends on the individual child and the severity of closure
of
the sutures. In our experience, only one of our doctors seems
to want
to see Allie more often than necessary. Our eye dr., but best
to keep
on top of those things. Since we have Kaiser, I dont think its
in their
best financial interest to make unnecessary appointments... Remember
you
are the one who makes those decisions for your child. There are
times
when we have cancelled appointments because we just couldnt take another
one. Not many but sometimes it is best for the emotional well
being of
your family. When you"re at your limit, you"re at your limit.
Best to all!
Claudia and Allie
=========================================================================
Date: Tue, 19 Jan 1999
01:49:39 -0600
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From: "MARK E. DUBAS"
<Murphy@PLATTEVALLEY.NET>
Subject: Re: a little more about me...
MIME-Version: 1.0
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Content-Transfer-Encoding: quoted-printable
Hello....
=20
It seems I didn't include some information
about myself that I =
guess was just overlooked..
I live in Columbus, Nebraska, which is 90 miles west of Omaha,
Ne.
I mentioned I'm a janitor, I am a lead person for my shift also,
being =
in charge of 4 others. I have an area of the building I am responsible
=
for, as well as overseeing the others, and answering any pages I may
=
recieve.( I carry a pager at work)
Take Care....
Mark
----------
From: BBarn60368@AOL.COM
Sent: Monday, January 18, 1999 5:26 PM
To: APERT@LISTSERV.AOL.COM
Maxine and Mark:
Welcome to the family! I just love hearing from you adults with
Apert. =
What
an inspiration you two are to us and our children! I don't think
either =
of
you mentioned where you live. In which state/country do you reside?
Also, could you tell us about your elementary school years? It
seems to =
me
that people tend to expect a lot less of Shirley (my 5 year old with
=
Apert)
than she is capable of. Did you experience this? Her teachers,
administrators, and day care personnel keep wanting to hold her in
=
younger
programs or classes. It drives me crazy.
Maxine, you mentioned that you sent pictures. Where to?
I checked the
clubhouse and found nothing.
Welcome again and thank you so much for opening your lives to us.
Alice in Orlando, Florida
=========================================================================
Date: Tue, 19 Jan 1999
01:56:44 -0600
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From: "MARK E. DUBAS"
<Murphy@PLATTEVALLEY.NET>
MIME-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Content-Transfer-Encoding: quoted-printable
Hello again...
=20
Guess I didn't read Alice's letter very closely,
it was asked if =
teachers wanted to hold me back..Other than in second grade, when I
had =
the surgery on my feet, I did not experience any resistance that I
=
remember, I fell way behind in second grade, and struggled catching
back =
up.All other grades went well for me.
Mark
=20
----------
From: BBarn60368@AOL.COM
Sent: Monday, January 18, 1999 5:26 PM
To: APERT@LISTSERV.AOL.COM
Maxine and Mark:
Welcome to the family! I just love hearing from you adults with
Apert. =
What
an inspiration you two are to us and our children! I don't think
either =
of
you mentioned where you live. In which state/country do you reside?
Also, could you tell us about your elementary school years? It
seems to =
me
that people tend to expect a lot less of Shirley (my 5 year old with
=
Apert)
than she is capable of. Did you experience this? Her teachers,
administrators, and day care personnel keep wanting to hold her in
=
younger
programs or classes. It drives me crazy.
Maxine, you mentioned that you sent pictures. Where to?
I checked the
clubhouse and found nothing.
Welcome again and thank you so much for opening your lives to us.
Alice in Orlando, Florida
=========================================================================
Date: Tue, 19 Jan 1999
08:46:58 EST
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From: Irmocat2@AOL.COM
Subject: Myrtle Beach
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Hi all, it feels good to write to the list again and I am doing this
on my
own, because Don is at work. I know a lot of you expressed interest
in the
Myrtle Beach vacation, but mentioned that the hotel rates were too
high. You
can go to the Myrtle Beach website www.myrtlebeachlive.com
or call
1-800-356-3016 and request the Stay and Play in the Myrtle Beach Area
guide
free. It is a 370 page guide to all the hotels, motels, condos,
etc. in the
Myrtle Beach area. Maybe you can find a more reasonable hotel
rate from that
book. Even if you don't stay at the Crown Reef, you can always
come and bring
the kids to the 20 something pools and go out on the beach with us.
The
hotels across the street from the ocean are more reasonable and so
are the
ones further inland. I hope this information helps and maybe
we can get more
of our family to come to the beach. Well got to go,
Teeter's home with a
headache and I just have to go and watch Jerry Springer (that's what
stay at
home mom's are supposed to do). I just love my job!!
Love to all, Cathie (Teeter's mom)
=========================================================================
Date: Tue, 19 Jan 1999
08:49:07 -0800
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From: Anna Gong <qigong@LTIONLINE.COM>
Subject: Re: Surgery
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BBarn60368@AOL.COM wrote:
> Dear Timothy and Mechelle:
>
> The controversy is in the age the mid-face surgery is done.
Some doctors
> recommend starting at 5 or 6 and some recommend waiting until later.
I
> believe the earlier they start the more surgery is needed because
the face
> continues to grow and the surgery has to be done over and over to
keep
> catching the mid-face up.
I agree with what Alice said. I want to add: According to my understanding,
the
other problem with early midface surgery is that when the bone gets
detached and
scared from the surgery it will have very little further growth. This
will make
the
midface grow even slower than the rest of the face. Therefore once
you have
an early midface advancement, it's likely it will need to be repeated.
Qing (Vivi Zhang's mom)
>
> Alice in Orlando, Florida
=========================================================================
Date: Tue, 19 Jan 1999
09:13:20 -0500
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From: Don Sears <dsears@SCRS.STATE.SC.US>
MIME-Version: 1.0
Content-Type: text/plain
I would also like to welcome all newcomers. Maxines pictures are
at my
house - hopefully I'll get to scan them tonight. I have a few
others
too.
Don
> Maxine, you mentioned that you sent pictures. Where to?
I checked
> the
> clubhouse and found nothing.
>
>
=========================================================================
Date: Tue, 19 Jan 1999
10:35:54 EST
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From: Nodrmat26@AOL.COM
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Maxine~
Hi, my name is Christina and my 2 year old, Zoey has Apert Syndrome.
I have a
question. I've been told by Zoey's genetisist that Zoey has a
50/50 chance of
having an Apert child herself, should she choose to have kids someday.
Was
wondering if your children have Apert syndrome. You don't know
how good it is
to hear your story. I want my daughter to have a "normal" life.
Thank you
for joining the listserv.
Christina
San ANtonio
=========================================================================
Date: Tue, 19 Jan 1999
12:59:49 -0500
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From: Rich Thornquist
<rlthorn@EARTHLINK.NET>
Subject: Re: Long time no talk!!
MIME-Version: 1.0
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Alice,
I think I'm a wimp too, but it isn't the bottle before bed that I'm
opposed to. I
just want Andrew to sleep through the night before this new baby comes
along. I
certainly don't need two children up in the middle of the night.
I haven't given
him a bottle in the middle of the night for two weeks, and he is still
waking up
either just fussing, or asking for juice.
I would send Andrew to my sisters for a couple of days, but she has
the same
problem with her two year old. So I think she is just as wimpy.
Lynn
=========================================================================
Date: Tue, 19 Jan 1999
13:02:19 -0500
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From: Rich Thornquist
<rlthorn@EARTHLINK.NET>
Subject: Re: Long time no talk!!
MIME-Version: 1.0
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Alice,
One more thing. I have seen a dentist in the hospital during Craniofacial
program, but all he said was that Andrew has a very slight underbite
and a grade 2
adenoids and tonsils. He said that Andrew would need a midface
advancement when
he was about 12 years old, but what do we do about the underbite?
I don't think I
was really impressed by this dentist. Maybe I will ask his Craniofacial
Surgeon
about seeing someone else.
Thank you for your input, I really appreciate it.
Lynn
=========================================================================
Date: Tue, 19 Jan 1999
13:24:01 -0500
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From: Rich Thornquist
<rlthorn@EARTHLINK.NET>
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Hello Maxine,
My name is Lynn Thornquist and my son Andrew has Apert. He just
recently turned
2 years old and is a happy, vibrant little boy. Andrew has had
three cranial
surgeries, and two hand surgeries. Besides all the ear tubes
and ingrown
toenail surgeries. His next surgeries will start again when he
is 3 years old.
We have been surgery free for almost a year now (how exciting).
Andrew's
plastic surgeon (for his hands) will start to thin down his fingers
for better
function and to look a little more typical (I guess). Andrew
also needs his
thumb and index fingers straightened.
I want to thank you for that inspirational e-mail you sent. I
loved every
minute of reading it. I just have a question....does your daughter
have Apert
or CP? Because I was under the impression that an Apert adult
would have a
50/50 chance of having an Apert child. That just amazes me.
I guess there is
really very little they know about the genetics of this disability.
I am glad to see you have been living a wonderfully normal life.
I think it
brings hope for our children as parents. I think we all wonder
about what their
life will be like in the long run. I try not to be too over protective
of
Andrew, but at times it is hard. My husband is the worse, but
with some things
I think he would be the way he is if Andrew didn't have Apert.
One thing I have learned is to stop saying, "oh Andrew can't do that",
because
how do I know he won't be able to do that. I do not pamper him
as much because
society will not pamper him either.
Well that is all I have to say, except for Welcome to our Family!!!!
I'm sure
you will love it here. I think it is great to have an adult Apert
with a child
on hand if we have any questions. Hope we hear from you real
soon.
Lynn
rlthorn@earthlink.net
=========================================================================
Date: Tue, 19 Jan 1999
12:47:46 -0600
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From: Judy Amerman
<jamerman@UTI.COM>
Subject: Re: Myrtle Beach
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
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HI,
Another option for those who would like to go to the beach but cut cost
would be to check out the campgrounds or maybe room share if you feel
comfortable with that. Maybe those who would like to share the
cost, could
let the listserv know and those of you interested could get together.
Last year when we had the Lake Shelbyville trip, Dori and I gave
up one of
our cabins so that the Tingleys could go. We had never met but
turned into
instant roomies with no problems. (Just a thought)
Amy, real or not, it was a great story!
Judy
=========================================================================
Date: Tue, 19 Jan 1999
12:39:51 -0800
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From: rreed <rreed@CABLEONE.NET>
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Hi Christina and Lynn,
I just want to say first off is this
Listserv club. Is great. I really
enjoy reading your letters and just knowing that I can help someone
gives me
great pleasure. Please don't be afraid to ask me anything. I'll try
to
answer all your questions if I can. No, my daughter doesn't have aperts
or
CP. In my wild and craszy days at 29 I met what I thought was my true
love.
He was as normal as what people think as normal is. But do we really
know
what normal is! Anyway I got pregnant and he decided he didn't want
to be a
full time dad so he split. When I had my facial surgery at 21, I at
that
time talk to a genetisist and she told me too that there was a 50/50
chance
of me having a normal baby. But I never thought that I would get pregnant
when I did, I wantrd to wait unti I got married and then have children
but
it didn't work out that way. Anyway I am glad it turned out the way
it did
because at the time I had Sarah I had high blood presure and Sarah
was
breeched and I had to have her C-section. After I had her the doctors
told
me that I better not have any more because I might get high blood preasure
again. So then when I met my husband Bob and he said that he didn't
want to
take the chance of lousing me after he heard all that I went through
with
having Sarah he dicided to get fixed. I think that if your kids want
to get
married and have kids some day I would say let them. There's always
that
chance, But there's alot of chances in life that we all take whather
we are
so called normal( I say that because not everybody is normal we all
have
problems, it just that some are greater then others) or handicapped.
So let
them take it the good Lord will help them along the way He has me.
I
wouldn't be here today if it wasn't for Him.Oh yes Sarah is very normal
and
is a great help to her Mom and Dad ( Bob adopted her after we got married)
And she's very strong willed. Which at times can be mind blowing.Well
I gota
go Iam also a car pool mom besides a stay at home mom I need to get
my
daughter and her friends from School. Talk to you later. Happiness
Maxine
=========================================================================
Date: Tue, 19 Jan 1999
16:31:17 -0500
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From: baconsmith <bluenose@TELUSPLANET.NET>
Subject: Wimpy Mommies Unite!
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Alice and Lynn, I'm a wimp too. EvaJessie went to bed with her
bottle until
she was just past three. She had only water in it the last couple
years,
but I let her keep it as long as possible.. but that was because I
wanted to
encourage her sucking and swallowing. Okay, I will admit that
she settled
herself faster and bedtime was easier on me ;-)
Having two kids up together or worse (consecutively) means napping whenever
you can.
As to being a wimp, I say go with the flow. If it works, smile
and
repeat. :-)
yfhdhd
Pat
>
>I think I'm a wimp too, but it isn't the bottle before bed that I'm
opposed
to. I
>just want Andrew to sleep through the night before this new baby comes
along. I
>certainly don't need two children up in the middle of the night.
I haven't
given
>him a bottle in the middle of the night for two weeks, and he is still
waking up
>either just fussing, or asking for juice.
>
>I would send Andrew to my sisters for a couple of days, but she has
the same
>problem with her two year old. So I think she is just as wimpy.
>
>Lynn
>
=========================================================================
Date: Tue, 19 Jan 1999
16:50:20 +0000
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Comments: Authenticated sender is <jgibson2@POP.erols.com>
From: jgibson2@EROLS.COM
Subject: Re: Long time no talk!!
In-Reply-To: <36A4C815.E8A47B9A@earthlink.net>
MIME-Version: 1.0
Content-type: text/plain; charset=US-ASCII
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> night. I haven't given him a bottle in the middle of the night
for two
> weeks, and he is still waking up either just fussing, or asking for
juice.
I think if you keep this up, he'll get used to doing
without that
middle of the night bottle. Two weeks probably just isn't long
enough.
One other alternative, though, if he's fussing too much is to
give
him a bottle of water. You don't have to worry about tooth damage
with that, so he can just take it to bed with him (unless you think
he'll open and dump it). Can you tell I'm a wimp, too.
Judy
Judy Gibson
jgibson2@erols.com
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Date: Tue, 19 Jan 1999
18:31:49 -0600
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From: sbc <sbc@COMWARES.NET>
Subject: Sorry no E-Mail
MIME-Version: 1.0
Content-Type: multipart/alternative;
boundary="----=_NextPart_000_004F_01BE43D9.FA1077A0"
This is a multi-part message in MIME format.
------=_NextPart_000_004F_01BE43D9.FA1077A0
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Hi everybody this is Stephanie Tingley Thanks for the letters that you
=
sent me. Welcoming me to the listserv. I just found out
that my E-Mail =
is not working but I am still getting the listserv messages.
Sorry if =
some one has E-Mailed me and i have not replied back. Hi Dori
Jefferson =
tell Seth Taylor says hi and to Nik Amermon. If anybody has any
go =
ideas on hand care after hand surgery i would like to no. Next
week is =
the first hand surgery. Mechelle Hoult I sent you a E-Mail
can you =
please let me no if you received it ok. Good Night.
Stephanie =
Tingley 217-269-3264
------=_NextPart_000_004F_01BE43D9.FA1077A0
Content-Type: text/html;
charset="iso-8859-1"
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<!DOCTYPE HTML PUBLIC "-//W3C//DTD W3 HTML//EN">
<HTML>
<HEAD>
<META content=3Dtext/html;charset=3Diso-8859-1 =
http-equiv=3DContent-Type>
<META content=3D'"MSHTML 4.72.3110.7"' name=3DGENERATOR>
</HEAD>
<BODY bgColor=3D#ffffff>
<DIV><FONT color=3D#000000 size=3D2>Hi everybody this is Stephanie
=
Tingley Thanks=20
for the letters that you sent me. Welcoming me to the =
listserv. I=20
just found out that my E-Mail is not working but I am still getting
the =
listserv=20
messages. Sorry if some one has E-Mailed me and i have not
replied =
back. Hi Dori Jefferson tell Seth Taylor says hi and to Nik
=
Amermon. =20
If anybody has any go ideas on hand care after hand surgery i would
like =
to=20
no. Next week is the first hand surgery. Mechelle
=
Hoult I sent=20
you a E-Mail can you please let me no if you received it ok.
Good=20
Night. Stephanie Tingley=20
217-269-3264</FONT></DIV></BODY></HTML>
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Date: Tue, 19 Jan 1999
20:07:09 EST
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From: TheMorenos@AOL.COM
Subject: Re: Myrtle Beach
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In a message dated 1/19/1999 7:47:16 AM, you wrote:
<<I just have to go and watch Jerry Springer (that's what stay
at
home mom's are supposed to do). >>
ME TOO!
I can help with hotels. When not being a mom, I am a travel agent.
I pay a
fee to be in a program that gets lower rates for most of the hotel
chains.
sincerely
robin moreno
=========================================================================
Date: Tue, 19 Jan 1999
20:12:04 EST
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safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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From: Cristy Williams
<CARLEE0604@AOL.COM>
Subject: Re: Sorry no E-Mail
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Stephanie and Carroline,
Just wanted to welcome you. I am Cristy, mother of Carlee. She was born
June
4, 1998. We have been through 2 hand surgeries and a head surgery coming
up as
soon as Carlee's hands heal from this last surgery. It was nice hearing
from
you. I have spoke with Mechelle on the phone. Her daughter Courtney
is one day
older than Carlee. This list serv sure has been helpful to us. If you
ever
want to talk just email me or you can call me at (904)276-9163.
Take care and
keep in touch.
Cristy and Carlee
=========================================================================
Date: Tue, 19 Jan 1999
20:50:52 EST
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From: Cristy Williams
<CARLEE0604@AOL.COM>
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Hello Maxine,
It was great reading your story. it is very encouraging to hear from
someone
with a few years under their belt with Aperts. Not to many years though.
My
name is Cristy and I have a 7 month old daughter Carlee who is very
loving. I
will be looking in the clubhouse for your pictures.
Hope everyone else is doing okay. We found out last thursday that Carlee's
first cranial surgery will be done as soon as she heals from this last
hand
surgery done on Dec. 31st. She had her pinkys released. They are looking
alot
better. I have to clean them and rewrap them daily. I always wanted
to be a
nurse when I was a little girl. Now I am experiencing things I didn't
get a
education for. Just hands on training. HAHA. We are thinking of you
all. I
would love to go to June trip. I don't know if Carlee will still be
recovering
from a surgery or not. If not, there is always next year.
Sincerely,
Cristy and Carlee
in Florida
=========================================================================
Date: Wed, 20 Jan 1999
21:03:13 EST
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From: GSieb91515@AOL.COM
Subject: Various
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Happy Belated Birthdays to Andrea, Carmen Rae, and Zoey. Hope
everyone had a
splendid day. Also, I believe the Bradleys are celebrating a
birthday today.
Is that right?
Andrea- I know your decision to have the surgery in May was a
tough one,
especially since you have had such a great outlook through some of
the
toughest teen years. However, I don't think you will regret
your decision.
Please keep us advised as the date gets closer.
Lynn- Sorry to hear your not feeling well. I know my second pregnancy
was the
pits. I never was nauseated but my back always hurt and it was
difficult to
breathe. But we all know it is worth all the suffering when that
beautiful
baby finally arrives.
I justed wanted to share a recent experience. We were in Dallas
for an appt.
with Jonathan's neuro and orthopedic surgeons. While we were
waiting in a
play/food area before our time, a family approached us and asked if
Jonathan
had Apert syndrome. They were there from Colorado and had an
11 old week baby
girl. She was in ICU and had just received a trach. The parents
were very
upbeat and a pleasure to visit with. We talked about the listserver
and they
were aware of Teeter's Page. I strongly encouraged them to contact
Don and
get hooked up when they had a chance. It felt really good to
be able to help
someone else and be there for them.
Hope everyone is doing well.
Brenda
Houston
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Date: Wed, 20 Jan 1999
21:15:19 EST
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From: Marilyn Williams
<Mbwill43@AOL.COM>
Subject: note
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Hi all Carlee's grandma here Carlee had a hearing test today and all
was great
we knew that but like it when the specialist know it to . Andrea
I think of
you often and your up coming surg. Carlee will probably have her first
head
surg. in the spring I'll let you know. talk to all later Marilyn
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Date: Wed, 20 Jan 1999
18:49:31 -0800
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From: Christine Clark
<apertnet@IX.NETCOM.COM>
Organization: Apert Support & Information Network
Subject: Hello Mark
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Hi Mark,
Glad to see you on the listserv.
There are several adults with Apert on my networking list if you would like to join. I just need your address, phone number and birth date. I can also add you to my mailing list to receive APERT NEWS when I am finally healed from the cancer treatments.
E-mail me privately with this information and I will send you a list when I can.
All my best,
Christine Clark
Apert Support & Information Network
P. O. Box 1184
Fair Oaks, CA 95628
(916) 961-1092 (phone + fax)
apertnet@ix.netcom.com
=========================================================================
Date: Wed, 20 Jan 1999
19:15:15 -0800
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From: Christine Clark
<apertnet@IX.NETCOM.COM>
Organization: Apert Support & Information Network
Subject: Picture of Maxine in APERT NEWS
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For anyone who is looking for a picture of Maxine (until Don gets hers
scanned) there are two pictures in the November 1995 issue of APERT
NEWS
on the last page. They are a before and after surgery picture
(the
after being with her husband and daughter). There was also a
little
story about her in the July 1995 issue (page 2).
Glad to see you're finally on the listserv, Max!! You are a wonderful
inspiration for everyone.
Christine
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<html>
For anyone who is looking for a picture of Maxine (until Don gets hers
scanned) there are two pictures in the November 1995 issue of APERT
NEWS
on the last page. They are a before and after surgery picture
(the
after being with her husband and daughter). There was also
a little
story about her in the July 1995 issue (page 2).
<p>Glad to see you're finally on the listserv, Max!! You
are a <b><i>wonderful
</i></b>inspiration for everyone.
<p>Christine</html>
--------------0AA005B3CA042D99FA4AAB46--
=========================================================================
Date: Thu, 21 Jan 1999
08:07:30 EST
Reply-To: Information exchange and Internet
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From: TFinch10@AOL.COM
Subject: Re: APERT Digest - 19 Jan 1999
to 20 Jan 1999 (#1999-19)
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Dear All,
Our family was at the Bruins hockey game (we live in Boston) last weekend
and
a Catholic priest came over to us and said, "I noticed your son. Does
he have
Apert syndrome?" We said yes, and began to talk. Father Devine (perfect
name
for a priest) was from Pennsylvania, somewhere in the Poconos and there
was a
family in his parish with a daughter, age 10 or so, who had Apert syndrome.
He'd baptized the child as a baby, seen her grow and flourish and was
delighted to meet another family. Is the Sincavage family (I think
that was
the name) out there on the Listserv? Just thought I'd share this story.
Best, Jeanne in icy Boston (Nate's mom)
=========================================================================
Date: Thu, 21 Jan 1999
10:07:05 -0500
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From: Rich Thornquist
<rlthorn@EARTHLINK.NET>
Subject: Re: APERT Digest - 19 Jan 1999
to 20 Jan 1999 (#1999-19)
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Jeanne,
I never realized that you all lived in Mass. This is Andrew's
mom and we live in
Hopedale, MA. I have met the Tolsens, but have never met you.
Do you all go to
Children's Hospital in Boston? I can't believe that I have been
on the listserv
this long and never knew that. Boy am I daft!!!
That was it, talk to you later.
Lynn
rlthorn@earthlink.net
=========================================================================
Date: Fri, 22 Jan 1999
00:08:11 -0500
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From: Andrea Gartner
<agartner@PEGANET.NET>
Subject: People knowing Apert
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I find it that people in this world, besides doctors, are aware of what
Apert is.
About two years ago, I was shopping at the Port Charlotte Mall.
My mom and
I noticed this woman was watching me. After awhile she finally
came up to
me and asked if I had Aperts. She said she had a niece who had
it. I gave
her my phone number to give to them, but never got a call.
It seems like Apert's is increasing and becoming more known.
Take Care -
=========================================================================
Date: Thu, 21 Jan 1999
19:38:41 -0500
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From: The Stroupes
<stroupes@MINDSPRING.COM>
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