Hi! Gang,
Our little Andrew 9 months with Apert has his cleft palate
operation on March 1st. What can we expect after the op.?
- Feeding/nipples,Hands in mouth,pacifiers/"Binky".
-Taking liquids after the op.
I am very apprehensive about this one. Even though it is
less intrusive than the others.
Any help with this will be greatly appreciated.
Your Friends,
Rich & Karen Hartley in PA.
(610)975-6938 Rich at work.
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Date: Mon, 15 Feb 1999
15:43:39 -0600
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From: Carbide Tech
<ruth@CARBIDETECH.COM>
Subject: The latest News on Kris and
others!
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Dear All,
I hope you all are doing good. Lately I have only been lurking
because I
have been so busy....But I wanted to share the latest on Kris Contreras
and
what has been going on with her. Kris had surgery Thurs. 2/11-
We insisted
on the Dr. doing both of her hands. It's a little hard for all
of us,
because we have to do everything for her for the next 3 weeks. but
I really
think that we did the right thing. Because Kris is getting to
where she
gets extremely nervous when surgery time comes. Anyway, besides
having
anxiety attacks. She is doing great.
Most of you will remember that I am working on trying to get Miss ViVi
from
Argentina to come to the USA for treatment. Well, we are still
working on
it but some things have changed. We are now workiing on getting
her to
come to Houston, The hospital has at least responded to me by requested
some pictures of her which I have done today. Continue praying
for us.
I am praying for our little ones who have had or are going to have surgery.
Brenda Siebert, it's time for all of us to get together again, Mrs.
Sherry
has said either your house or mine. How's Jonathan?
Hope everyone had a great Valentines day.
Love Ruth Contreras
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Date: Mon, 15 Feb 1999
17:51:56 EST
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From: GSieb91515@AOL.COM
Subject: Re: Please help ASAP
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We have had 4 hand surgeries to date and each time the surgeon used
soft
dressings which were changed after one week. Then we saw the
surgeon each
week after that but with us changing the bandages every 2-3 days as
Jonathan
managed to get out of them. We have not had any problems with
skin grafts and
are very pleased with the results. I know our surgeon does it
this way to
keep a close eye on any infection brewing and to make sure the grafts
are
healing properly.
Good luck! Our prayers will be with you as you face this surgery
and your
decisions.
Brenda Siebert
Houston
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Date: Mon, 15 Feb 1999
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From: GSieb91515@AOL.COM
Subject: Re: RED System
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When our son was in Dallas for his cranial surgery with Dr. Salyer,
we saw a
patient of Dr. Fearon's with this device. It was the third one
they had used.
Thanks for the info.
Brenda Siebert
Houston
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Date: Mon, 15 Feb 1999
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From: Robin MacDonald
<macdonal@GOLDEN.NET>
Subject: Re: apert's
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christine bucci wrote:
>
> hello everyone and Robin
>
> what i meant when someone reaches retirement age is the physical
aspects
> of apert's. For example, i have club feet and wear corrective
shoes.
> When i get older will i have the same mobility to walk as i do now.?
i
Christine,,,,I am not an expert in gerontology...but...as we age we
tend
to lose some of what physical abilities we do have. I have noticed
that
people who exercise regularily are very often successful in slowing
down
the aging process.
I am 44 and swim regularily...a great overall exercise..and one that
we
are getting our six year old daughter involved in (she has aperts).
Even though her range isn't like the other students...she still really
enjoys the water.
Anyways...the point of my story is that I have competed against people
in their sixties....and have trouble beating some of them in the shorter
distance races.
So....do something you enjoy on a regular basis..and hopefully the
improved conditioning and tone that you receive from regular
exercise
will benefit you later in life.
signed..."I'm still trying to beat a 60 year old in 50 free!"
bye..
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From: BBarn60368@AOL.COM
Subject: Re: RED System
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I'm very interested in the RED system. Does anyone have any more
info or
first hand experience?
Alice in Orlando, Fl
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Date: Mon, 15 Feb 1999
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From: Yonstein@AOL.COM
Subject: Re: We need your advice. Cleft
Palate.
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Dear Rich & Karen:
Boy do I know how you feel. Emily now 18 months had her palate
repaired at
around 9 months old. I did a lot of research at www.widesmiles.org.
It was a
great site for palate info. There is a page there that has questions
to ask
your doctor.
Our experience was this. The surgery went well. The hardest
part for Emily
was the fact that they used a tongue stitch. They actually put
thread through
the very end of the tongue and tape it to her cheek. This is
to keep the
tongue from blocking the airway. That was the most uncomfortable
part for
her.
I was told to expect bleeding afterwards, but she didn't have any.
Her arms
were put in restraints. They were soft and closed with velcro.
She really
didn't mind them too much. She only stayed in the hospital one
night. By the
morning she came home she was drinking from a regular bottle.
Our surgeon
said to start her and see if she did, and she did. She actually
took juice
and then formula right away with her regular nipple. Then when
we came home
that day I gave her some baby food and she ate it fine.
By the next day she was her self again. I only used the restraints
when I
wasn't able to watch her; sleeping and such.
What a relief it was to feed her and not have the food come out of her
nose
all the time. She was relieved to not have it burn her also.
Any other questions, feel free to e-mail me.
Best wishes,
Janine
Yonstein@aol.com
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Date: Mon, 15 Feb 1999
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From: Yonstein@AOL.COM
Subject: Re: Hand Surgeries
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In response to the questions on hand surgery, Emily has had one hand
surgery
and was casted almost up to the shoulder. She, too, had skin
exposed so that
we could see the color of it. And she, too, was a Houdini.
She got out of
her cast after about 10 days when the swelling went down.
As for hand surgeries she is scheduled for this coming Wednesday the
17th for
her second one. I've just gotten clearance from the pediatrician,
so
providing nothing goes wrong between tonight and Wednesday morning,
we will be
going. This time, however, she is scheduled as an out-patient.
Please keep her (and us) in your prayers.
Best wishes to the rest of the kids having surgeries or recovering.
Janine Krebs
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Date: Tue, 16 Feb 1999
00:36:34 EST
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From: Mary Bresnahan
<Munch35738@AOL.COM>
Subject: Re: We need your advice. Cleft
Palate.
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Rich and Karen, hi my name is Mary, and I was born with a cleft palate.
The
child may want to play with the stitches. My parents had the
hardest time
from keeping me from play with them. I am not sure about the
feeding. There
is another link called cleft talk. cleft-talk@franz.mother.com
and the
parents might be able to offer help. Mary
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Date: Tue, 16 Feb 1999
00:45:48 EST
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From: Lisa Guyette
<LAM1126@AOL.COM>
Subject: From the Guyettes.
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Wow I wish I had heard about the Red System here first. Last month
I broke
down for the first time really since our daughter Samantha was born,
after our
neurosurgeon started to tell us how we could try a procedure where
you crank
the mid face forward etc. I thought I heard wrong that
it might be us doing
the cranking. Reading it here though it didn't sound so bad.
How old are the
kids when they have this done? Does it help their breathing and teeth
complications better? Does it help to make their
face more normal or just a
little better?
We will be seeing the neurosurgeon again Wednesday and I will ask these
questions then too, instead of crying this time. Samantha
is having a MRI
first and then we'll discuss if it's time to do the back of the head.
*****************************
My daughter can be straight in the car seat or laying down and then
she moves
her head to the left side and then toward the ceiling. Tri regional
center
said I should break her of this habit. My mother-in-law agrees
and moves her
head straight all the time. I'm having trouble with this.
I feel she needs
to do this for some reason, like maybe it helpsher airway. Does
anyone else
have this problem? Do you know if there is a reason for this.
I'm not even
sure this has to do with Aperts, cleft palates and mid face underdeveloped
or
that it's just a habit of Samantha's.
****************************************
Good luck to those with surgeries. I started a nightly ritual
sooner than I
thought I would with teaching Samantha to pray for her friends with
Aperts
also. She's only three months, but I believe she'll come
to accept this as a
important thing to do.
Love, Lisa Guyette
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Date: Tue, 16 Feb 1999
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Lisa:
My Shirley kept her head turned upward a lot of her first year.
It is NOT a
habit that needs to be broken! I believe you were right when
you said it
helps open Samantha's airway. If you think about it: What is
the first thing
you do before you start mouth to mouth? You tilt the head back
to clear the
airway. That is exactly what our kids are doing when they through
their heads
back. They grow out of it as they mature and the airway matures,
so don't
worry about it and do NOT try to break her of it. All the Apert
kids I have
met do it.
Alice in Orlando, Florida
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Date: Tue, 16 Feb 1999
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From: Michael Sharrow
<msharrow@CAMALOTT.COM>
Subject: Re: From the Guyettes.
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I'm not sure exactly what the age limits are with RED, but Dr. Fearon
indicated to us that he doesn't want to do the procedure on teens...I'm
sure
there are many factors involved, and every case is different...it's
worth
checking out, though...but the important thing is...keep your head
up,
you're not alone...and it DOES get better, with your help.
My daughter will undergo the procedure in the next few months...I'll
keep
you posted.
Write anytime....Michael Sharrow (Talitha's dad)
msharrow@camalott.com
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Date: Tue, 16 Feb 1999
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From: Michael Sharrow
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Alice,
I'm working on getting you families addresses that have
experienced this
procedure. I'll get back to you later today.
Michael Sharrow
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Michael:
Thanks!
Alice
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Date: Tue, 16 Feb 1999
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From: Marilyn Williams
<Mbwill43@AOL.COM>
Subject: note
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Hi you all keep Carlee in your ;prays as she is on her way to the craniol
dr.
as I write this so they should set a date for head surgery today the
one we
have been dreading , I know alot of you have been here and know what
we are
going through, I'll let you know when the date is set Marilyn Carlee's
Gram
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Date: Tue, 16 Feb 1999
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From: lmaclean@NETCOM.CA
Subject: Bursting with pride
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Hi everyone,
I have been mainly lurking lately. I'm teaching kindergarten two
days
a week and volunteering in Amy's classroom once a week.
Amy came home with her first spelling list a week ago. She had
3 right
out of 16 on her pretest. After studying her words all week I
knew she
knew them but was still not sure how well she would do with all the
distractions in the classroom. She came home as pleased as ever
with
a certificate indicating that she got 100%. So much for my concern!
I told her to find room on the fridge to put it so she moved her older
brothers work and promptly placed it where his had been! Guess
she
figured that exact spot on the fridge was the place of honor...little
imp! She was kind enough to leave his work up, just in another
spot.
It is one of those accomplishments that makes me look back and think...
she only had a 30 word vocabulary at three and now she is 6 1/2, in
grade one and right on track. Just had to share it with someone!!!
Leanne in snowy Alberta,
Canada
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From: Rich Thornquist
<rlthorn@EARTHLINK.NET>
Subject: Re: Bursting with pride
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Good going Amy!!!!!
Leanne, you have every right to be proud and excited at the same time.
I
feel the same way about Andrew now. He is 2 1/2 and we're trying
to get
him to say 2 word combinations, but it just doesn't seem to be coming
that
easily. But I must say, Andrew now has a 60 word vocabulary,
when just 7
months ago, he was only saying about 6 words. What a jump!!!!
Well, Amy should be proud of her accomplishments and I think I can speak
for most everyone out there that we are also proud of her.
This is just the first of many.
Lynn
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Date: Tue, 16 Feb 1999
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From: baconsmith <bluenose@TELUSPLANET.NET>
Subject: Re: We need your advice. Cleft
Palate.
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Dear Rich and Karen. Hi, Pat here, EvaJessie's mom. EvaJessie
had her
palate repaired at age 10 months. It was five years ago, so I'll
try to
recall things correctly.
The procedure was a couple of hours. EvaJessie had a procedure
called a
Furlow double opposing z-plasty. It is an alternative to the
Wardill push
back procedure, and is thought by many (and corroborated in the literature)
to result in a longer more flexible soft palate. This is important
because
the soft palate (with that little uvula thingy hanging down) is needed
to
close off the back of the throat in order for certain sounds to be
produced
during speech. also of course for swallowing and for blocking
off the nasal
passages so food does not get up into there. The Wardill procedure
is also
commonly used and has good results. You can study both procedures
on PubMed
through the abstracts.
I've been on the widesmiles list for three years now and there are some
variations in how each doctor approaches the after care. Our
surgeon and
hospital (in Vancouver BC) allowed us to go straight back to the Mead
Johnson bottle that EvaJessie was used to. Some however will
have you wean
the baby off the bottle prior to surgery and feed with a cup only.
Some
will have you syringe feed during the healing process. If you
are asked to
syringe feed, there is a special nipple called a Ross nipple that is
basically a long tube that fits over the cleft palate nurser.
It is usually
acceptable to the surgeons, but you'll want to check first what the
protocol
is at your hospital. The trick with feeding is that you don't
want Andrew
to put pressure on the sutures in the palate and sucking will do exactly
that. With the MJ squeezy bottle, we could squirt the milk and
EvaJessie
did not have to suck.
We followed every feeding wtih a rinse of clear water up into the palate
area. Thisis also important to keep the area clean and free of
germs. An
infection you do not want!
Arm restraints: Again, docs differ in this area, too. Ours
had us use the
restraints for ten days to two weeks. We were allowed to take
them off for
baths and for some arm exercise. But we were careful not to let
her get
those fingers in her mouth -- which again would risk the healing site
by
possible tearing or infecting the sutures.
The binky: Your surgeon may not want Andrew to do any sucking
and so may
ask you to take it away for the healing period.
EvaJessie too had the tongue stitch. It was a black thread through
the
tongue and taped to her gown or cheek. It was removed as soon
as I got into
recovery to see her. The nurse clipped it and it just slipped out.
I had to
be sure to hold her upright and forward facing a bit, so that the tongue
wouldn't slip back and block her airway. When she got into her
room (we
stayed for two nights) they had her in a sling that kept her laying
in an
elevated position -- the top of her crib was elevated and she was somehow
strapped in so she wouldn't slide down into a little heap. She
was kept on
IV overnight and when she finally started to drink, they removed the
iv.
A note about getting them to eat. We kept her on plain old tylenol
every
four hours for the first couple of days at home. Whether she
seemed to need
it or not, we dosed her on schedule. We usually gave it to her
about 15 to
20 minutes before she ate, so it would dull the pain and allow her
to take
food. Kind of a constant pain block for her first few healing
days. They
sent us home wiht codeine but we didn't use it. We learned with
EvaJessie
anyway, that the coedien seemed to take away her appetite.
Another note on eating. Evajessie wouldnt' take anything at first
because
the hospital didn't have her brand of formula. So do be sure
and take some
of your own supply that Andrew is familiar with.
Also be sure to take a few of his favourite things --- blankies, stuffies
and so on -- although yuo probably already know this from his previous
surgeries.
EvaJessie sailed through this procedure. It really wasn't too bad.
Once we were home, we cuddled and sang and played and rocked as much
as we
could. She seemed to bounce back pretty quickly. Hope the
same goes for
Andrew.
Hope this helps. I'll be happy to give you more info if you want.
Pat in Calgary
>Our little Andrew 9 months with Apert has his cleft palate
>operation on March 1st. What can we expect after the op.?
>- Feeding/nipples,Hands in mouth,pacifiers/"Binky".
>-Taking liquids after the op.
>
>I am very apprehensive about this one. Even though it is
>less intrusive than the others.
>
>Any help with this will be greatly appreciated.
>
>Your Friends,
>Rich & Karen Hartley in PA.
>(610)975-6938 Rich at work.
>
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Date: Tue, 16 Feb 1999
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From: GSieb91515@AOL.COM
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Christine-
By the time I read this you have already had your surgery. We
hope that you
are recovering nicely. You continue to be in our thoughts and
we hope that
you are home with your family soon.
Brenda
Houston
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From: GSieb91515@AOL.COM
Subject: Re: The latest News on Kris
and others!
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Ruth,
I didn't realize that Kris was having surgery. Glad to hear that
everything
went well. I know what you mean about the three weeks.
Jonathan is scheduled
for his next surgery with Dr. Shenaq on March 1. So maybe we
will run into
you there.
I would be glad to host the next get together. However, it will
have to be
after Easter before things calm down here a bit. I'm having periodontal
surgery on 2/23, then J on 3/1, then Melissa has dance competitions
on 2/20,
3/5 and 6th in Galveston and 3/26-28 in San Antonio as well as Spring
break
the week of 3/15. In between that time George in traveling out
of the country
on business. Let me know what would be a good time for everyone
else.
Best wishes to Kris on her recovery.
Brenda
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From: foster <foster@ICONTECH.COM>
Subject: Billy in Hospital
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I wanted to write to all of our friends to ask for prayers for our Billy.
He is in the hospital again and very sick. He was rushed to the hospital
early this morning . He was fine until yesterday which was Sunday but,
he
started to feel sick as the day turned to night with what the
doctors are
saying is another stomache virus. He just was not himself and we started
to
give him liquids . He had a low fever and just wanted to sleep. He
woke up
early this morning and he could hardly breathe. His little stomache
was
three times the usual and as hard as a brick. As soon as he got to
the
hospital the doctors in the ER wanted to sent him to Hershey saying
he had a
bowel upstruction. We waited for his doctor and she ordered exrays
and
bloodwork and started to drain some of the stuff through his Button.
He was
very dehydrated and his fever was 104.
He does not have an upstuction and after two hours trying to get a
good vein
she had put one in his head. The exrays showed distention and something
else
which they said a thousand times but I can not remember what it is
called.Anyway he is very sick and they can't seem to get his fever
down
below 103. This is all due to this damn virus going around. All of
this
happened within 24 hours from when he first started not feeling well.
Please say extra prayers for him and I will let you all know how things
are
going.
Hope all is well with everyone and we will keep all in our prayers as always.
Karen PA
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Date: Wed, 17 Feb 1999
00:26:20 EST
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From: Lisa Guyette
<LAM1126@AOL.COM>
Subject: Thanks
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Thanks everyone who answered my question about the tilted head that
it
probably is Samantha's way to clear the airways. I especially
liked the
mouth-to-mouth explanation. Now when people try to straighten
her head I
have a reason why it makes me uncomfortable.
Prayers to Billy and Carlee Please keep us informed.
Lisa Guyette
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Date: Wed, 17 Feb 1999
07:13:14 EST
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From: Marilyn Williams
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Subject: update
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Carlee, can not have surg. until her DR gets the nails off that keep
getting
infected some times the Dr.'s need to listen to the parents about
things, he
said it would be to dangerous to do it if she had any infection at
all ,which
we already knew that but the hand surgeon would not listen to her mom
and do
something about it except to give her antibiotics every 2or 3 weeks
. keep her
in your prayers and prayers to Billy and the rest of the kids
and parents.
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Date: Wed, 17 Feb 1999
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From: Mary Bresnahan
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Subject: Re: update
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Doctors almost never listen to the patient or the parent. Hope
that the
infection clears up for her to have the surgery.
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Date: Wed, 17 Feb 1999
08:28:58 -0700
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From: baconsmith <bluenose@TELUSPLANET.NET>
Subject: Re: Bursting with pride
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Dear Leanne and Amy. Love to hear this kind of great report.
Thanks for
sharing Amy's accomplishments. You should all be very proud.
You must be busy teaching and helping out. I try to get into EJ's
classroom
(Kindy) a couple of times a month. There are 25 kids in there
now -- its a
busy place. EvaJessie loves Kindy and is doing well.
Last year, Leanne you sent us a wonderful synopsis of your rationale
for
keeping Amy in a special classroom. But now, I take it, she is
in a regular
classroom in Grade one? Your decisions to keep up with her OT
and speech
and what not really paid off.
Would love to hear more updates when you have time.
Pat and EJ (Here in Calgary we are not getting any snow. Everything
is
melting and it feels like spring. The trees are even budding,
foolish things!)
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Date: Wed, 17 Feb 1999
08:31:37 -0700
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From: baconsmith <bluenose@TELUSPLANET.NET>
Subject: Billy and Carlee
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Just sending positive thoughts to Billy to get well and to Carlee also.
Its
not enough that our kiddos have to endure all these surgeries but with
viruses and infections too. Sometimes, it makes us want to rail
at the
gods, doesn't it? And boo hiss to those docs who are not listening
when
parents have things to say. Hope both kiddos are on themend quickly.
Pat and EJ in Calgary
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Date: Wed, 17 Feb 1999
14:34:11 -0800
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From: Richard Tait
<rjrtait@MARS.ARK.COM>
Subject: Thanks!!!
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Thank you for the many different stories about your hand surgeries.
I got
lots of good advice, and have already done some work around not having
casts
done. I spent 13 years as a paramedic, and feel that we could
handle
dressing changes and splints well enough. I have requested this
as it makes
the most sense to me as well. We already had infections set in
with our
last hand surgery. It was only 4 days post-op, and antibiotics
were given
during surgery. We'll have to see what happens. Thank you
again!
Thanks for your thoughts Dori. Julia does do badly post-op that's
why we
are trying to do everything in this 2nd surgery.
Good luck in your had surgery Emily. I can't believe it will
be as an
out-patient. I don't think we'll ever see that.
I was really sorry to hear how Billy was. We will keep him in
our thoughts
until he is better!
We are also proud to hear how well Amy is doing; it gives me lots of
hope
for Julia who is a bit behind but gaining daily. Good job Amy!!!
Sorry about the surgery delay Carlee. It is so hard to prepare
and then
have it cancelled. One step at a time they keep telling me.
Rene and family
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Date: Wed, 17 Feb 1999
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From: BBarn60368@AOL.COM
Subject: Re: Billy in Hospital
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Karen:
Billy is in my prayers.
Much love,
Alice in Orlando, Florida
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Date: Wed, 17 Feb 1999
19:34:41 EST
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From: Shirley Tanner
<TANRANCH@AOL.COM>
Subject: Re: RED System
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On the same subject, I too received this same info from Dr. Fearon.
He is our
craniofacial doctor & will be performing this RED surgery on Collin
May 25th.
For those of you who are interested I have spoken to a familly who's
son is
now 8 & at 5 yrs he had the Laforte III done where they wire the
mouth closed
and then in Oct of last year he had the RED & Laforte III done
together only
they didn't have to wire the mouth this time. The father had
wonderful things
to say about the RED system, especially compared to the first midface.
They
tell me the results are great and their son didn't complain of pain
at all. I
still can't imagine sleeping, eating & playing with this "halo"
attached to
your head for 7-8 weeks, but they said their son had no problem sleeping
or
eating. Matter of fact, they said he could breath so much better that
he
stopped snoring & was sleeping better. All of the things
I heard were very
encouraging & I have a picture of a little girl who Dr Fearon did
this surgery
on. It is a before & after & the results are truly amazing.
I can only pray
for results for Collin as good.
Thinking of you all,
Shirley Tanner
Hartford, AL
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Date: Wed, 17 Feb 1999
19:54:49 EST
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From: GSieb91515@AOL.COM
Subject: Re: Hand Surgeries
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Janine-
Hope all went well today with Emily's surgery. Let us know when
you feel up
to it. We are trying to stay healthy among lot's of virus' around
our town.
We're two weeks away from surgery #7 and our last hand surgery for
awhile. I
don't want to postpone this one. Hope you all have a peaceful
night.
Brenda
Houston
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Date: Wed, 17 Feb 1999
19:54:45 EST
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From: GSieb91515@AOL.COM
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Karen-
I am writing this as I prepare to leave for lent services this evening.
Your
Billy will definately be getting extra prayers from me tonight.
We are so
sorry to hear that this virus has made Billy suffer like this.
Brenda
Houston
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Date: Wed, 17 Feb 1999
19:54:48 EST
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From: GSieb91515@AOL.COM
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Way to go Amy! My Melissa is quite the speller herself in third
grade. Let's
hope that Jonathan does as well when he gets in school. Thanks
Leanne for the
update. It sure is encourages hearing success stories like these
as we get
ready to transition from ECI to the big school.
Brenda
Houston
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Date: Wed, 17 Feb 1999
20:21:27 EST
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From: ETolson643@AOL.COM
Subject: Re: SSI
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Hello to all:
As Tim approaches 18 (!) this fall, we are thinking about SSI.
We have been
unable to get SSI for him because of our family income. I'd like
to know what
experiences you have had in this process of getting SSI. My biggest
concern
is, of course, obtaining health insurance for Tim since our insurance
will not
cover him when he finishes school. I have no doubt that he will
work when he
completes school, but the insurance is a real concern and I see SSI
as taking
care of this need. Any suggestions, comments???
Beth Tolson
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Date: Wed, 17 Feb 1999
21:35:00 EST
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From: Nodrmat26@AOL.COM
Subject: Zoey's HAving Surgery
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Hello all~
I have been soooo busy lately, I haven't had time to even read all
the
messages. I hope Billy is doing well, I definately know what
it's like being
in the hospital with your child is like and I hope he'll be out soon
(and of
course, feeling better).
Zoey is having her LaFort III this Friday, the 19th. This is the
1st of 2
surgeries that will hopefully allow her trach to come out this summer.
I'm
very excited, and very nervous. Zoey doesn't have a clue.
Which is good, I
suppose. Please say an extra prayer for Zoey on Friday!
Gotta go and put kids to bed.
Goodnight all!
Christina
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Date: Wed, 17 Feb 1999
22:21:15 +0000
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From: "J. G. Lindamood"
<chanan8@JUNO.COM>
Subject: Re: SSI
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Hello out there!
If I remember correctly, I was working almost right out of high school
working in the kitchen in a small diner. I became the fastest
dish
washer they ever had! (Thanks to my organizational skills my
dad taught
me!) I was getting my feet wet in college, trying to find my calling
in
life. I think between still being "in school" as a college student
and
working, I was either covered by my mom's health insurance (my parents
were divorced) or at work. One job led to another and I eventually
had
my own insurance. I was never accepted to receive SSI because
I was
capable of working and able to provide for myself. In a way I
was
bothered by that. Moreso I am thankful, it made me get out there
and
prove myself to the employers.
Joanne
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Date: Wed, 17 Feb 1999
21:31:38 -0800
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From: "Brent E. Young"
<beyoung@IX.NETCOM.COM>
Subject: Re: RED System
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Shirley Tanner wrote:
> On the same subject, I too received this same info from Dr. Fearon.
He
> is our
> craniofacial doctor & will be performing this RED surgery on
Collin
> May 25th.
> For those of you who are interested I have spoken to a familly who's
> son is
> now 8 & at 5 yrs he had the Laforte III done where they wire
the mouth
> closed
> and then in Oct of last year he had the RED & Laforte III done
> together only
> they didn't have to wire the mouth this time.
>
> Hi Shirley,
I have question for you. What is the difference between the RED and
the
Laforte III. Is the Laforte III the same thing as the midface
advancement. How come they wired the mouth shut one time and not the
other in that little boy's surgery?
Bye,
Kelly Spadini
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Date: Wed, 17 Feb 1999
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From: "Brent E. Young"
<beyoung@IX.NETCOM.COM>
Subject: Midface Advancement Surgery
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Hi everyone,
I am hoping to have my midface advancement surgery approximately 9
months from now. I am a bit weary as to what the end result will be.
I
think what would really help is for me to see some before/after
pictures. Also I had a few questions to ask all of you:
How long was the recovery process? How long was the stay in the
hospital?
Were you limited only to soft foods?
Did you have to have your whole head or a section of your head shaved?
Did you have to have your mouth wired shut?
Any answers and advice would be appreciated.
I have also thought about the fact that other people, especially my
peers are going to notice since I am probably going to have the surgery
in the beginning of the schoolyear.Any feedback, especially from teens
who have had this done, would be greatly appreciated.
Talk to you soon,
Kelly Spadini
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Date: Wed, 17 Feb 1999
21:34:35 -0800
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From: "Brent E. Young"
<beyoung@IX.NETCOM.COM>
Subject: Re: Billy in Hospital
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> Hi Karen,
I was so sorry to hear about poor Billy. I will be thinking about him
and I hope he gets better quick. Please keep us updated on how he's
doing.
From,
Kelly Spadini
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Date: Wed, 17 Feb 1999
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From: "Brent E. Young"
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Subject: Re: Zoey's HAving Surgery
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Christina,
I will be thinking about Zoey this Friday. Please let us know how
everything goes. Hope all goes well.
Kelly
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Date: Wed, 17 Feb 1999
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From: "Brent E. Young"
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Subject: Re: Bursting with pride
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You go Amy!!! I was really good in spelling too. I was in spelling bees
and always succeeded up to the district-wide spelling bees. I always
got
a boost in my self-confidence when I won or succeeded by getting 100%
on
a test. I hope you feel the same.
Your, Friend
Kelly Spadini
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Date: Wed, 17 Feb 1999
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From: Robyn Johnston
<robyn@ORDATA.COM>
Subject: Re: Billy in Hospital
In-Reply-To: <199902170509.AAA16886@elvis.icontech.com>
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Karen, You and Billy are in our thoughts. Poor little guy,
does not sound
like fun. Give him a ton of love!!! I will pray that he
will improve soon.
Robyn J.
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From: Robyn Johnston
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Subject: Re: Zoey's HAving Surgery
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Christina,
You, Zoey and your family will be in our prayers. I hope
all will go well
for you r little sweetie and she may be ready for getting the trach
out
soon.
Hugs, RObyn J
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Date: Thu, 18 Feb 1999
21:15:47 +1300
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: Bursting with pride
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Go Amy!! Well done to you and your Mum for working so hard.
Cheers
Ann, Howard and Amy
NZ
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Date: Thu, 18 Feb 1999
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From: Rich Thornquist
<rlthorn@EARTHLINK.NET>
Subject: Re: Billy in Hospital
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Karen,
Here is hoping everything is alright with Billy. He will fight
this off and be
back to him old self very soon. I will be saying extra prayers
for him tonight
as well as for you. Don't forget to take care of yourself as
well.
Lots of love to you and Billy.
Lynn Thornquist
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Date: Thu, 18 Feb 1999
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From: Rich Thornquist
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Subject: Re: update
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Marilyn,
I have been reading about your problem with the ingrown nail problem.
Andrew had
problems with his nails before his hand surgeries. But they never
really got
ingrown because we went and saw his doctor every 4 weeks to have him
clip his
finger nails. I never clipped Anrew's fingernails until after
surgeries. He used
a special pair of scissors and magnifying glass. Perhaps this
is a temporary
solution until the surgeries. You can also get the infection
under control by
doing this. Another good ointment to help with infection is called
Bactoban.
Andrew's pediatrician prescribed it for us just to have on hand in
case of things
like this (since Andrew would be having multiple surgeries).
It is strong stuff
and works great.
Just a little bit of advice.
Lynn Thornquist
rlthorn@earthlink.net
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From: Marilyn Williams
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Subject: Re: update
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Lynn thanks for the in put about the nails Cristy will be glad for any
information about this problem thanks again
Marilyn
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From: Rich Thornquist
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Subject: Re: RED System
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Hello All!!
About this RED System surgical procedure.....I don't know if I would
be able
to do that. Why is this so much better? Is this in replace
of the current
midface procedures? And at what age are they done....are they
done earlier?
It just seems so midevil sounding to me. I don't know if I would
be able to
adjust something like that on my child's head. What do you do
about
school? Does your child still go while this contraption is on
their head?
I think I would have to keep Andrew out of school until it was off.
I am
neurotic like that. I mentioned this procedure to my husband
and he flat
out said "NO". I guess it will take time to collect information
and alot of
talking with Andrew's surgeons.
But correct me if I'm wrong, Beth, but do you think Dr. Mulliken would
perform this surgery?
If anyone can respond to my e-mail, please do. I have so many
questions,
and have a horrible picture of it painted in my head. Please
correct my
fears if possible.
Lynn
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Date: Thu, 18 Feb 1999
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From: ETolson643@AOL.COM
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Lynn
It just so happens that we have an appt tomorrow with Dr. Mulliken.
I plan on
asking him about this procedure. I'll let you know his response.
Beth
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From: Andrea Gartner
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Subject: Re: Midface Advancement Surgery
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Hi Kelly,
I know exactly how your feeling. I too will be having surgery
done, but on
May 29. I am a bit weary about the end result too.
My 2 biggest question
is will I like the "new me", and the anesthesia part. Im having
wants
called a Frontal orbital advancement. I think it's similar to
a midface.
Their going to make the eyes look "average" move them closer together
and
"round off the sides" of upper head if you know what I mean, and lengthen
the nose. Three months later I'm going back for a lefort 3 to
do the jaw
part. .I had some of the same questions you did. Others
I didnt even think
of. Here's what I know from my doc. I'm having it done
at Miami Children's
Hospital by Dr. Anthoney Wolfe.
The stay in the hospital is from 5 to 7 days. My doc told me I'll
be
staying at least 1-2 days in ICU. It depends on how fast you
recover.
About shaving, I think you have the top part of it shaved, where they
do the
cut.
When I'm fully recovered, I'll be more than happy to tell you more if
you
want. I'm going to try to keep a journal. You can see how
I look now on
Teeter's Page, but the info about hobbies, and major is outdated.
If you have any questions or wanna chat, let me know.
Andrea
agartner@peganet.com
=========================================================================
Date: Thu, 18 Feb 1999
14:57:21 -0500
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From: Andrea Gartner
<agartner@PEGANET.NET>
Subject: Re: Bursting with pride
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Way to go Amy! Keep it up girl. You can do it.
-Andrea
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Date: Thu, 18 Feb 1999
14:59:06 -0500
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From: Andrea Gartner
<agartner@PEGANET.NET>
Subject: Re: Zoey's HAving Surgery
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Christina,
Zoey will be in my thoughts and prayers tomarrow and over the weekend.
I
hope she has a easy, speedy recovery.
With Love,
-Andrea
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Date: Thu, 18 Feb 1999
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From: Andrea Gartner
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Subject: Re: Billy in Hospital
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Karen
Billy will be in my thoughts and prayers. Im sure he'll fight
this and be
recovered. We apert people don't give up without a fight!
I get so
frustraded with these viruses going around too. It makes you
think if the
flu shot really works.
Sending prayers your way,
Andrea
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Date: Thu, 18 Feb 1999
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From: Andrea Gartner
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Subject: Re: Twins with Apert
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Christine,
Im sorry to hear your back in the hospital. I hope that you have
a speedy
recovery, and things get back on the bright side.
-Andrea
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Date: Thu, 18 Feb 1999
13:22:52 -0800
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From: rreed <rreed@CABLEONE.NET>
Subject: Hi Everybody Max here!
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Hi Everybody Max here, I am been reading but just haven't had the time
to
write. Today I found sometime since everybody is going to be gone for
at
least two hours. I first want to say that Billy and his mom are
in my
prayers, I had this flu thats going around a while back and it was
awful. I
just hope and pray that noboby else gets it and I pray that little
Billy
gets better real soon. Iam also praying for little Zoey, Jonathan and
little
Carilee and their up comming surgerys and for the parents, they need
all the
prayer they can get too!
A great big
hug and that's great to Amy for her spelling be
contest thats super. You're showing everybody that us Aperts people
can make
a differents.and we are great people. We all are great people. Kelly
I
wanted to answer you question about face surgery I had my face surgery
about
23 years ago and what I can remember is that they shaved part of my
head off
which wasn't so bad because I had it done during the summer and I didn't
go
out to much. When I did I wore a wig. I had my jaw wired up for about
6 to 8
weeks and all I could it was milk shakes and broths soups. Which was
ok with
me because I lost a lota weight which I liked. The first surgery they
did
semilar to what Andrea is going to have done. Then I went back about
6
months later and had my nose done. Which was fun because I told everybody
that I had a sking acident in Switzerland in the elps. I only said
that when
we were out in public and people were staring at me. After all the
surgery
was done and all the bruising and swelling had gone down. I took a
long look
at my self and didn't see any difference, but my family did and in
fact my
little cousin didn't even recognize me I had to tell her it was me.
I didn't
really believe it until I saw my high school graduation picture and
I
picture that of me about a year later. I'll try and see if I can find
them
and make some copys of them. I was really pleased with the out come.
I know
how you and Andrea must be feeling right now. I was feeling the same
way.
But Iam glad I did it. If I can help you with any more guestions and
you
still need some moral suport. I'll be there for you just let me know.!
That
goes for you too Andrea if there's anything I can help you with, just
let me
know. About that Red sugery, I don't know if I would want to do that.
It
seems that the can of surgery that I had was much easyer, it took longer
to
recover but I didn't feel to much pain only where they took out the
bone
graft that was under my breast from my rib. It only bother me when
I wore a
bra, other wise I wasn't in any pain. I hope I help. Keep in touch
and let
me know if theres any questions I can answer for you both.
I hope I answered any questions
that Lynn had! I know that you had
some questions about facial surgery. I hope my answer to Kelly helped
you.
How is lettle Julia doing
from her sugery?
Last but not least I wanted to but my two cents in about hand
surgery and
about cast Vs, soft wraps. What I can remeber and from the pictures
that
where taken of me when I was little I had soft wrapes and what my parents
told me I got along fine with them. Thats all they remember and so
do I.
Take Care all. I'll be praying for all the little ones who are having
surgery and also for their speedy recovery. Happiness to all Maxine
(Max)
Reed in Modesto, Calif.
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Date: Thu, 18 Feb 1999
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From: Ryan Bradley
<Bradleys_r@COMPUSERVE.COM>
Subject: Bursting with pride
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Leanne:
This kids are smart!!!
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Date: Thu, 18 Feb 1999
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From: rreed <rreed@CABLEONE.NET>
Subject: Get Wells
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Hi Iam back I just wanted to seconded that about what Andrea said about
us
Aperts not giving up without a fight. We don't. I have come along way
and
had many surgery and sickness I always came out on top. So little Billy
start fighting. We're all rooten for you.
I also want to say to Christine
I hope you are feeling better and
you are in my prayers too. Keep fighting Christine we need you.Love
ya Max
=========================================================================
Date: Thu, 18 Feb 1999
17:00:55 -0600
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From: Michael Sharrow
<msharrow@CAMALOTT.COM>
Subject: RED System
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Let me comment a little about the RED System. LeForte III is part
of the
RED System procedure...only they do not have to take bone from the
skull,
nor do they have to wire the jaw. They make the usual cuts in
the bone
(midface) then the distractor is fastened on both sides of the head
with a
splint on the upper part of the mouth. The bone grows behind
as the face is
slowly moved forward....I've seen pictures of the brace on a
patient...Folks, it is not near as bad as it sounds....two weeks out
of
school is the general...I can make some copies of the pictures and
send them
to anyone if they would like. msharrow@camalott.com
Also, I have addresses of families that have undergone the procedure.
....By the way, I'm not a doctor, the above info is what I have received
from the doctor, since my daughter will undergo this procedure in a
few
months. We're all very excited about this one....it's definitely
a
break-through.
Michael Sharrow (Talitha's dad)
=========================================================================
Date: Thu, 18 Feb 1999
20:00:12 EST
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From: Yonstein@AOL.COM
Subject: Re: update
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Hello All:
Just wanted to let you all know that Emily came through her surgery
on
Wednesday great. After a little nausea she was sent home with
us and did
great. She has a cast on her arm almost up to her shoulder.
We'll see how
long before she manages to get this one off.
I am truly amazed at her healing power. She began eating and drinking
as soon
as we got home and even slept through the night until 7 a.m.
What a trooper!!
To Billy, Karen and family, sorry to hear about Billy being in the hospital.
I hope by the time you read this, he is improving and able to come
home.
That's pretty scary.
Carlee, hoping that you improve as well and can go ahead with your surgery.
Christine, always in my prayers, hoping you are doing ok and recovering also.
To Amy, way to go!! It shows that your hard work has paid off for you.
Good luck to Zoey tomorrow on her surgery. Will say an extra prayer
for you,
too.
Best wishes to all. Hope I haven't forgotten anyone.
Janine Krebs
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Date: Thu, 18 Feb 1999
20:28:51 EST
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From: Cristy Williams
<CARLEE0604@AOL.COM>
Subject: Re: Zoey's HAving Surgery
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Christina and Zoey,
Just want you to know that ya'll are in our thoughts and prayers. We
will be
looking forward to hearing from you soon after recovery.
Cristy and Carlee Williams
in Florida
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Date: Thu, 18 Feb 1999
17:36:43 -0800
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Hi Jamie Just wanted to say I am so glad to hear that Emliy is doing
so well
after surgery and that she's home( where she'll get the best of care)
already. It just amazes me how tuff us aperts kids are. Keep it up
Emily,
you are in my prayers as all the little ones, who are having surgery
are.
Happiness Maxine( Max)
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Date: Thu, 18 Feb 1999
20:41:44 EST
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From: Cristy Williams
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Subject: Re: RED System
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I was just wondering if the RED system is also called a "CAGE"? Carlee's
neurosurgeon had mentioned to us earlier, that Carlee may get one later
on. It
was described like the RED system, that there would be screws that
we would
have to adjust at home. Sounded very scary, but we are willig to do
anything
to help Carlee. If that would prevent them from wiring a child's mouth
shut,
it would be worth it just by that alone. That's just my opinion. If
anyone has
ever heard it called a Cage (which sounds scarier than RED system)
please let
us know.
Thanks,
Cristy and Carlee Williams
in Florida
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Date: Thu, 18 Feb 1999
19:54:39 -0800
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From: "Brent E. Young"
<beyoung@IX.NETCOM.COM>
Subject: Re: Midface Advancement Surgery
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Andrea,
Thanks for replying. I am glad to know others out there who are going
through what I am going through. I already had am idea of how long
my
hospital stay would be, but I just wanted to see how it went for others.
I have a concern with Anesthesia. Doctors and Nurses always have a
really hard time finding veins when it's time for me to have an IV.
I
had my wisdom teeth plus four other teeth pulled in December and they
couldn't find my vein. So I had to go without IV, which was the total
opposite of what I was ready for. I would love to hear how your surgery
went. I think that it might help my jitters.
Thanks Again,
Kelly
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Date: Fri, 19 Feb 1999
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From: "D. Jefferson"
<djeff@MIDWEST.NET>
Subject: Re: Mid-face advancement
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Dear Kelly,
Seth had mid-face distraction in combination with the LaFort III in
September. The RED system is external fixation. We were
first offer that
procedure but turned it down because we weren't ready for the mid-face
and
I couldn't even imagine the device and how Seth would tolerate it.
Two
years later we were offered the internal fixation method which we did.
It
works the same way only the device in on the inside and not on the
outside.
The only thing that showing is two cables that come out from
above the ear
and temple area and those are cut off as soon as the mid-face has reached
the proper position. That takes around 10 days. The incision
was ear to
ear and only that area was shaved. If you have longer hair than
Seth's you
could cover it easily. Seth was not in any discomfort from the
procedure.
He had to have a trach and that gave him fits.
I would be happy to send you pictures of Seth before, with the device
and
after if it would help you to visualize the process. Had Seth
not gotten
an infection in the right distractor he could have been back to school
in
two weeks. For Seth, in the long run, the process was a success.
Now that we have done the process, we can see the advantages of
the RED
system. The device would be stronger and there might be less
chance of
infection. However, I feel certain that Seth's infection came
from the eye
infection he developed in the right eye the week before surgery.
That was
just too coincidental.
If I can answer any questions or sent pictures, please just let me know.
I
know how apprehensive we were before Seth's surgery and how much we
appreciated the in put we received from two families that had experience
with the process.
Warmly, Dori
Dori A. Jefferson
djeff@midwest.net
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Date: Fri, 19 Feb 1999
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From: "Wittenburg,
Mark" <Mark_Wittenburg@TEMPE.GOV>
Subject: Re: Second child question...
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Lynn,
I was very concerned about introducing a new baby to my (two year old)
daughter in May of 1990. We read books about the new baby and
about being a
big sister. We took her to the store and encouraged her to pick
out her own
baby and all the accessories and she could not have cared less......UNTIL
THE BABY WAS BORN!!!! As soon as she saw Jake she said "Oh good,
MY baby is
here now." All you can do is try to keep the older child involved,
let them
help take care of the new baby in small ways---holding the towel during
batch time, or be official keeper of the blankets. It might be
a good idea
to let him go on "dates" with dad every now and then to prepare him
for when
you need time alone or to be away. Instead of holding the toy
baby,
couldn't you lay down on the floor and have it lay on a pillow and
show your
son how to gently rub the baby's belly or hand? This IS a challenge!!!!
Best of luck and I hope these suggestions will help.
-----Original Message-----
From: Rich Thornquist [mailto:rlthorn@EARTHLINK.NET]
Sent: Monday, February 08, 1999 3:18 PM
To: APERT@LISTSERV.AOL.COM
Subject: Second child question...
Hello everyone,
I have a question to ask all parents of multiple children. Since
we're
expecting our second baby in May, I was wondering how I should prepare
Andrew for it? We have told him many times that there is a baby
in
mommy's belly and pointed, but he doesn't seem interested. We
have 4
cats and he is nice to them. He understands what a baby is if
we see it
in the store, but that's about the extent of it.
My sister had suggested getting a baby doll and holding it and letting
Andrew hold it, but I don't want Andrew getting into the habit of
holding the baby. He doesn't have a problem with sharing mommy
as much
as he does with sharing daddy. I watch my niece on Tuesday and
Thursday
mornings so he has had to adjust to sharing me and my lap sometimes
(although there isn't much lap these days).
Any suggestions would be greatly appreciated.
One more question.....
I am preparing to bring Andrew to the dentist. I know he will
scream
bloody murder because he hates people touching him on his face or head.
(you should see him at the hairdresser) Has anyone else had this
problem and if so, how did you overcome it. I don't want to have
to
hold him down and then him never like the dentist. My pediatrician
gave
me a name of a dentist that uses alot of personality and humor.
We are
going to try him. But as far as acting up, should I forget it
if he
does and walk out or what?????? Again, any suggestions would
help.
Thanks everyone.
Lynn
rlthorn@earthlink.net
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Date: Fri, 19 Feb 1999
13:16:11 -0500
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From: Timothy Holt
<tholt@WEBTV.NET>
Subject: Questions
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First of all, I want to wish Zoey, Billy, and Carlee the best of a
speedy recovery. These times are the hardest to deal with.
I am going through my own crisis at this time.....
Day before I
noticed that Courtney's pupils would roll back in her head, and she
would almost be still, and would quit breathing. She was motionless,
which is very rare for a 8 1/2 month old. I took her to the dr
yesterday. Courtney's peditrician seems to think
she is having silent
or mini seizures. We are going to have an EEG on Monday.
Her
peditrician also seems to think that they are due to her head growth.
We have also noticed the head growth.
Has any one had this to happen, or have epilepsy with Apert?
Any and all response will be appreciated!!!!!
Heart broken in NC
Mechelle
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Date: Fri, 19 Feb 1999
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From: "Wittenburg,
Mark" <Mark_Wittenburg@TEMPE.GOV>
Subject: Update on Jackie Lynn
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Although we don't write a lot, we lurk a lot........
So best wishes to all those that are healing or recovering from surgeries
and illnesses, and welcome to so many new families and individuals
who
have joined this esteemed group!!
Our little Jackie Lynn is heading out to Texas for hand and toe surgery
on
March 6th. We would appreciate you all putting in a good for
her when
you are saying your prayers. Dr. Fearon has performed the same
surgery on a
local Apert friend of ours with wonderful results, so we hope for the
same!!! Dr. Fearon told me of a procedure where he puts "bends"
in the
fingers that enable Apert patients to have more function. We
are going to
find out more about that when we get there.
In other areas, after a year long battle with b------- (bureaucracy)
Jackie
is back in therapy and flourishing. Her speech is 50% intelligible
and she
signs to us when she said something we didn't understand. She
is a very
happy little girl and loves to eat bananas, play in the bathtub and
take
walks!!
Thank you in advance for adding her to your prayer lists!!!!!
Any suggestions how to prepare for the flight back home???????
=============================================
Mark Wittenburg Technical
Services Supervisor
City of Tempe
http://www.tempe.gov
602-350-8237
markwi@tempe.gov
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Date: Fri, 19 Feb 1999
15:02:03 -0600
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From: Laurie Bailey
<jkb@ELPASO.NET>
Subject: Jacob on specialchild.com
Comments: To: Tuula Kujala <tuula.kujala@edu.keminmaa.fi>
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Hey everybody,
Just wanted you all to know that Jacob is on this week's edition of
SpecialChild Magazine on the web. You can see him at specialchild.com.
Laurie
jkb@elpaso.net
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Date: Fri, 19 Feb 1999
15:21:58 -0600
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From: "Allison's: GO
USA, Inc" <gousa@GOUSAINC.COM>
Subject: Re: Jacob on specialchild.com
In-Reply-To: <199902192107.PAA17751@elpaso.net>
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Hi Laurie,
Job well done.
He looks great!
<http://www.specialchild.com/>
Mike Allison and Family
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Date: Fri, 19 Feb 1999
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From: "Brent E. Young"
<beyoung@IX.NETCOM.COM>
Subject: Re: Mid-face advancement
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Dori,
Thanks for the advice. They way that you described sounds much better
than I have it pictured in my mind. I would really appreciate
it if you
could send me some before/after pictures.
My Address is: 909 Woodlake Lane
Roseville, Ca 95661
Kelly Spadini
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Date: Fri, 19 Feb 1999
18:09:47 -0600
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From: Michael Sharrow
<msharrow@CAMALOTT.COM>
Subject: Alice
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Hi Alice...just wanted to make sure you got that address I sent ya...
Michael (Talitha's dad)
=========================================================================
Date: Fri, 19 Feb 1999
18:32:21 -0600
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From: Michael Sharrow
<msharrow@CAMALOTT.COM>
Subject: Re: Midface Advancement Surgery
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Hi Kelly,
My daughter had a LaForte III...when they made the cut
from ear to ear,
they didn't shave any hair...just made a "zig-zag" all the way so it
wouldn't be so noticeable in the long run. She spent 5 days in
the hospital
and recovery time wasn't all that much longer. Not to fear...medical
advancements are many...my daughter didn't cry even once! I know
every case
is different, but now-a-days, they make sure you're comfy...If they
don't,
tell them to because they can. I know I'm sounding like I'm painting
a
pretty picture of something that's not so fun, but if you have a good
attitude, you'll do really well. How old r ya? My daughter
is 11 now and
will have another surgery in a few months.
Michael (Talitha's dad)
=========================================================================
Date: Fri, 19 Feb 1999
18:06:04 -0700
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From: baconsmith <bluenose@TELUSPLANET.NET>
Subject: Re: Jacob on specialchild.com
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Cool Laurie. I recognized that cute picture. Thanks for letting us know.
Pat and EJ in Calgary
>Hey everybody,
>
>Just wanted you all to know that Jacob is on this week's edition of
>SpecialChild Magazine on the web. You can see him at specialchild.com.
>
>Laurie
>jkb@elpaso.net
>
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Date: Fri, 19 Feb 1999
19:32:40 -0600
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From: Michael Sharrow
<msharrow@CAMALOTT.COM>
Subject: Re: Update on Jackie Lynn
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Mark,
Lots and lots of prayers are with you and yours....for the flight
back..make it fun for all of you...and relax
Michael (Talitha's dad....Dr. Fearon's patient)
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Date: Fri, 19 Feb 1999
19:27:12 -0800
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From: "Brent E. Young"
<beyoung@IX.NETCOM.COM>
Subject: Re: Midface Advancement Surgery
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Michael Sharrow wrote:
> Hi Kelly,
> My daughter had a LaForte III...when they made
the cut from ear to
> ear,
> they didn't shave any hair...just made a "zig-zag" all the way so
it
> wouldn't be so noticeable in the long run. She spent 5 days
in the
> hospital
> and recovery time wasn't all that much longer. Not to fear...medical
> advancements are many...my daughter didn't cry even once! I
know
> every case
> is different, but now-a-days, they make sure you're comfy...If they
> don't,
> tell them to because they can. I know I'm sounding like I'm
painting
> a
> pretty picture of something that's not so fun, but if you have a
good
> attitude, you'll do really well. How old r ya? My daughter
is 11 now
> and
> will have another surgery in a few months.
> Michael (Talitha's dad)
Micheal,
Thanks for the input. I am trying my best to have a good attitude about
this. I am 17 now. I had many opportunities to have it when I was
younger, but my mom and dad wanted to leave it up to me, and I was
never
ready due to a huge amount of fear. But now I wish I had. For the last
few years, doctors have repeatedly said, "It will be next summer, it
will be next summer." Doctors always told me that it would be to my
benefit to have it at a younger age, and I wish that I would've listened
so I would have it all behind me now. Now, instead of fearing it, I
just
want it to be over already. Most of the others are saying pretty
much
the same thing as you, so I think this is really helping. I have this
awful picture painted in my mind. I am trying to think only good
thoughts and that only the best will happen. My doctor told me
that I
will spend around five days in the hospital and that recovery time
at
home will be a couple weeks.
What kind of surgery is your daughter having in a few months. Is it
related to the midface advancement surgery?
Well I better be going now. More e-mails to read and send.
Kelly Spadini
=========================================================================
Date: Sat, 20 Feb 1999
00:26:39 -0500
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From: Andrea Gartner
<agartner@PEGANET.NET>
Subject: Dr. Anthoney Wolfee
MIME-Version: 1.0
Content-Type: multipart/alternative;
boundary="----=_NextPart_000_000B_01BE5C67.AEEE6B00"
This is a multi-part message in MIME format.
------=_NextPart_000_000B_01BE5C67.AEEE6B00
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charset="iso-8859-1"
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Hi guys,
Im wondering if anyones "ange" had surgeries with Dr. S. Anthoney Wolfe
=
in Miami.
Im sure at least one person did, but I don't remember who. =20
I'd like to know what you thought of him and his team, especially the
=
anesthesiologist. (that's who I'm most concerned about).
Im assurming =
it was also done at Miami Childrens, so I'd like to know
your =
experiance there. Any info is appreciate. Thanks
Andrea
agartner@peganet.com
------=_NextPart_000_000B_01BE5C67.AEEE6B00
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 size=3D2>Hi guys,</FONT></DIV>
<DIV><FONT size=3D2></FONT> </DIV>
<DIV><FONT size=3D2>Im wondering if anyones "ange"
had =
surgeries with=20
Dr. S. Anthoney Wolfe in Miami.</FONT></DIV>
<DIV><FONT size=3D2>Im sure at least one person did, but I don't
=
remember=20
who. </FONT></DIV>
<DIV><FONT size=3D2>I'd like to know what you thought of him
and his =
team,=20
especially the anesthesiologist. (that's who I'm most concerned=20
about). Im assurming it was also done at Miami
=
Childrens, so=20
I'd like to know your experiance there. Any info is =
appreciate. =20
Thanks</FONT></DIV>
<DIV><FONT size=3D2></FONT> </DIV>
<DIV><FONT size=3D2>Andrea</FONT></DIV>
<DIV><FONT size=3D2><A=20
href=3D"mailto:agartner@peganet.com">agartner@peganet.com</A></FONT></DIV=
></BODY></HTML>
------=_NextPart_000_000B_01BE5C67.AEEE6B00--
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Date: Sat, 20 Feb 1999
07:21:51 EST
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From: BBarn60368@AOL.COM
Subject: Re: Alice
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Michael:
Yes, I did get the address. Thanks! I called Monica, missed
her, but she
returned my call. We still have not spoken, but I had planned
to call today
(Sat.) so we could have time to talk. By the way, we had met
several years
ago, but had lost touch. Thanks for the reintroduction!
Alice
=========================================================================
Date: Sat, 20 Feb 1999
07:33:00 EST
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From: Jenngram@AOL.COM
Subject: Re: medical miracles
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Just curious if anyone saw the ODD piece on Fox Thurs. night on medical
miracles.....One of the more interesting stories was done on Dr. Slayer
(from
Dallas surgery fame) and work hes done on some children.....He does
supurb
work...as I am sure all of our docs do!!!!
Jenn(Tampa/St. Pete)
=========================================================================
Date: Sat, 20 Feb 1999
07:50:26 EST
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From: BBarn60368@AOL.COM
Subject: Re: medical miracles
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Jenn:
Yes, I saw the piece on T.V. I was going to ask the same question.
Dr.
Sayler has done work on "our kids," in Texas, hasn't he? I was
very impressed
with the work he did on the little girl who was born without facial
features
on the one side. In the run through of the examples of his work,
there was a
child with Apert. Did you notice?
Did anyone else see the piece?
Alice in Orlando, Florida
=========================================================================
Date: Sat, 20 Feb 1999
07:59:49 EST
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From: Jenngram@AOL.COM
Subject: Re: medical miracles
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I know the picure you are talking about....it was actually how my husband
tore
me away form my book and got me to watch the show
I flipped through Tennessee's Craniofacial Book, and forund a picture
of the
young man pictured on thh show and I think he just had hypertelorism
, but
they featured a few of the skulls Dr. Slayer worked on and one of those
definitly looked Apert...
I also wanted to mention the Health Diary show on PBS aired here last
Monday....I missed the part on Aperts, but Jordans OT saw it as said
it was
great!!! Of course by the time I tuned in, I caught the last segment
of the
episode on tattoo removal...I was soooooo mad!!!!! OhWell!!!!!!!
Jenn(Tampa/St. Pete)
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Date: Sat, 20 Feb 1999
08:50:39 -0600
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From: "D. Jefferson"
<djeff@MIDWEST.NET>
Subject: Re: Seizures
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Dear Mechele,
Seth has had mild seizures since he was two (I think). They are
the
staring type (petite mal ?). His body temperature rises
and it just wipes
him out. Some times he has them in clusters and other times it
is months
between. I never know what triggers it. He had an
EEG but it didn't show
anything. His seizures are so infrequent that the doctors have
opted to
not to treat the symptoms. I have never been given even
a guess as to why
Seth has them. However, we are going to see the neurologist
again during
Seth's next team evaluation in March, maybe he can shed some light
on the
matter but I doubt it.
The seizures scare me to death. The doctors always want to know
how long
it lasts but I am too frightened to think to time them. In my
mind they
last hours, but I am sure that it is just minutes. So you may
want to try
to time them, I never could. All I ever wanted was for him to
come out of
it. Okay, I always panic.
Lately Seth has been having them in his sleep (three in the past year).
On
those days he is hard to wake up and will have one or two at the breakfast
table. It took me a while to figure out what was going on.
Usually he is
the first one up and has lots of energy.
I am so sorry to hear that Courtney is having what looks like seizure.
It
is almost insult to injury. Some times I feel like crying out,
"WHAT
NEXT!!! I can't take anymore!" And then I look at Seth and realize
how
much I love him and know that I can take anything that is handed me
as long
as I still have him to hold.
Warmly, Dori
Dori A. Jefferson
djeff@midwest.net
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Date: Sat, 20 Feb 1999
10:55:19 EST
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From: TDeakins1@AOL.COM
Subject: Re: Dr. Anthoney Wolfee
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If you're looking at Tony Wolfe, you may want to visit with Dr. Mutaz
Habal in
Tampa at the Tampa Craniofacial Clinic.
Tony Deakins
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Date: Sat, 20 Feb 1999
12:00:21 -0500
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From: Colleen Jones
<coljones@PTDPROLOG.NET>
Subject: medical miracles
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We also saw the show on Fox the other night. I was impressed with
Dr.
Saylor also and thought I had heard his name mentioned on the listserve
before as working with our kids. Anyone out there have him? The
one photo
did look like an Apert person to me too. It is amazing what can
be done.
Colleen, PA
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Date: Sat, 20 Feb 1999
12:00:29 -0500
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From: Colleen Jones
<coljones@PTDPROLOG.NET>
Subject: Seizures
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Our son, Jacob (2yrs) had two seizures when he was a baby. They
both
occurred on the same day when he was in the hospital. He was
very, very
sick at the time and had fevers. He was on Dilantin for the seizures
but
he has been off medicine for a year now. He has an abnormal EEG
but they
do not show seizure activities. Seizures are scary but they don't
do any
real harm unless they last for more than a few minutes or occur one
right
after the other. Still not a fun thing to see your kid having one!
Colleen
PA
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Date: Sat, 20 Feb 1999
11:56:45 -0600
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From: Michael Sharrow
<msharrow@CAMALOTT.COM>
Subject: Re: Kelly
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Hi again Kelly,
My daughter, Talitha, will be having a LeForte III, which is
mid-face.
She has Crouzon Syndrome. Along with the LeForte III will be attached
the
Rigid External Distractor "halo", which she will have on for 8 weeks.
Your
email helped me alot to deal with our situation, also. We really
don't want
to put Talitha through this ordeal, but we realize more and more that
it's
better to get it over with now. You're still young, so do your
best not to
delay it anymore...you'll do great! I can see that you realize
that....Anytime you want to talk or email me, just let me know.
My email
addy is msharrow@camalott.com Keep in touch!
Michael Sharrow (Talitha's dad)
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Date: Sat, 20 Feb 1999
18:27:33 EST
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From: Sheila MacDonald
<SMacdo1030@AOL.COM>
Subject: New member to the listserv.
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Hello Everyone,
My name is Sheila MacDonald, I have a 4 year old daughter named Paige.
She,
like your children was born with Apert syndrome. I also have
a 8 year old boy
named Colin. We live in the Boston area.
Paige has had most of her surgeries done at Mass General Hospital
and at
Children's Hospital in Boston. I have just recently changed Paige's
hand
surgeon to Dr. Joesph Upton. Many of you have probally have heard
of him
through the many articles and books that he has written about Apert
Syndrome.
Her first hand surgery that he will do is in April, and I am very excited
about what he said he could do for Paige. She was born with the
mitten hand
formation and we were only able to get 4 fingers out of it. It
is very
difficult for Paige to do that much with what she has but, every day
she
amazes us with the things she can do.
I am very thankful to Don, Cathy and Teeter for creating this wonderful
communication network for us....It is nice to talk too people who know
what
you are going through. I am looking forward to talking with everyone
and to
have this resourse for my daughter when she gets older, and for her
to make
new friends.
Until next time,
Sheila
=========================================================================
Date: Sat, 20 Feb 1999
17:45:25 -0600
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From: Michael Sharrow
<msharrow@CAMALOTT.COM>
Subject: Nice to meet you Sheila
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Hi Sheila....glad you found this group...I wanna tell ya that you'll
find
the neatest bunch of folks here, so make yourself at home....don't
be afraid
to ask any questions to anyone...we're all together here...hope your
weekend
is going well...hugs to you and Paige
Michael (Talitha's dad)
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Date: Sat, 20 Feb 1999
19:33:15 EST
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From: Sheila MacDonald
<SMacdo1030@AOL.COM>
Subject: Re: Nice to meet you Sheila
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Thank you Michael for your welcome, I have a good feeling that I will
like
being a part of this group. After reading all these letters I
can see that
there is alot of very nice people in here and I am looking forward
to getting
to know everyone.
Love, Sheila
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Date: Sat, 20 Feb 1999
17:00:18 -0800
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From: rreed <rreed@CABLEONE.NET>
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Hi Sheila, And Welcome to the club. My name is Maxine ( you can call
me Max)
Iam 44 years old soon to be 45 and have Aperts. Like you Iam fairly
new to
the Listsev. I've been on it for about 5 months and have enjoyed reading
about all these little ones and also have enjoyed sharing my life with
them,
I do hope I have helped some of the parents! I've also enjoyed making
so new
E-mail pen pals. We're a great group if I do say my self, and I hope
I can
help you with any questions that you might have.Take Care and again
welcome
to the family. Happiness Maxine or Max from Calif.
=========================================================================
Date: Sat, 20 Feb 1999
22:11:15 EST
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From: Shirley Tanner
<TANRANCH@AOL.COM>
Subject: Re: Midface Advancement Surgery
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Hi Kelly,
Sorry I haven't answered back sooner, but
I see Michael Shallow has
pretty much said what I would tell you about the RED system.
Dr. Fearon is
also our surgeon for Collin. He is scheduled to have the RED/LaFort
III done
on May 25th. We have to go out to Dallas 1 month prior to the
surgery to
visit the team orthodontist who will take the imprint of Collins mouth
for the
dental splint to be made. It has to be an exact fit. Then we
go for the
surgery which I understand takes about 5-6 hours. They make the incision
from
ear-to-ear, probably zig-zag as before (when Collin was 4 mos old).
They
didn't shave his head at all then so I don't expect them to now.
They will
make the cuts to the bones, across the nose, underneath the eyes &
down the
sides of the cheekbones so that the upperjaw can be slid forward. The
distraction device, which looks like "half" of a halo extending to
the front
of the face with a bar that extends from the middle down to the mouth,
then a
wire attaches to the end of this bar & goes into the mouth &
attaches to the
dental splint. (I am looking at a picture of a patient with the device
on) I
have never seen this thing in person. Anyway, I will have to
tighten the
screws daily for aproximately 4 wks. The device will slowly bring the
upper
jaw forward to the desired point. The device then stays in place for
another
3-4 weeks until the bones are healed. We will again drive out to Dallas
& have
the device removed. I am very excited & anxious about this
surgery. I know
Collin won't look like the same person we have become so fond of looking
at
but for his sake I know it is something we need to do for him. There
are so
many times I look at him & think "I don't see anything wrong" but
then I have
to come back down from up there & realize he does look different
& for him to
have the best life can offer, we as his parents, must do what we think
will
help him in the future. I hope that made sense. Anyway,
I have been told the
device is painless & the patients don't have problems eating or
sleeping with
this device. This is the part I am having trouble with. But as
we have all
seen with our Apert kiddo's, they are troopers & can handle just
about
anything!!!
Hope this helps. If you have any more questions,
I will be constantly
calling the doctors office from now until May 25th with questions for
them, so
I may can answer yours.
My prayers are with all of you going
in for surgery or recovering from
surgery or illnesses.
Take care,
Shirley Tanner
Hartford, AL
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Date: Sat, 20 Feb 1999
19:21:36 -0800
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From: "Brent E. Young"
<beyoung@IX.NETCOM.COM>
Subject: Re: New member to the listserv.
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Sheila MacDonald wrote:
> Hello Everyone,
> My name is Sheila MacDonald, I have a 4 year old daughter named
> Paige. She,
> like your children was born with Apert syndrome. I also have
a 8 year
> old boy
> named Colin. We live in the Boston area.
> Paige has had most of her surgeries done at Mass General Hospital
and
> at
> Children's Hospital in Boston. I have just recently changed
Paige's
> hand
> surgeon to Dr. Joesph Upton. Many of you have probally have
heard of
> him
> through the many articles and books that he has written about Apert
> Syndrome.
> Her first hand surgery that he will do is in April, and I am very
> excited
> about what he said he could do for Paige. She was born with
the
> mitten hand
> formation and we were only able to get 4 fingers out of it.
It is
> very
> difficult for Paige to do that much with what she has but, every
day
> she
> amazes us with the things she can do.
> I am very thankful to Don, Cathy and Teeter for creating this
> wonderful
> communication network for us....It is nice to talk too people who
know
> what
> you are going through. I am looking forward to talking with
everyone
> and to
> have this resourse for my daughter when she gets older, and for her
to
> make
> new friends.
> Until next time,
> Sheila
Hi Sheila,
My name is Kelly. I am 17 years old. I liven in Roseville, California.
I
was born with mitten hands, like Paige. Now I have four fingers, also.
I
can do almost everything my friends do, with the exception lof gripping
things. I am near getting my license, but not at all concerned about
driving and being able to grip the steering wheel, because I have driven
before while practicing with my dad.
I have not been a member of this listserv for long. I am so glad that
we
have access too. There was nothing like this when I was born. I don't
think I met anyone with Aperts Syndrome until I was about 6 years old,
and then I kept meeting more and more people. I think all you people
who
are having kids with Aperts Syndrome now have a real advantage.
Bye For Now,
Kelly Spadini
=========================================================================
Date: Sat, 20 Feb 1999
22:41:07 EST
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From: Marilyn Williams
<Mbwill43@AOL.COM>
Subject: Re: medical miracles
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Hi yes I saw the program and thought the one child had aperts was hoping
they
would show more on that but was disappointed they didn't but thought
he was s
uper.
Carlee's grandma,Marilyn
=========================================================================
Date: Sun, 21 Feb 1999
00:48:29 EST
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From: BOp1912@AOL.COM
Subject: Re: Nice to meet you Sheila
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HI Sheila
My name is Beth ,I am 34 yrs old and have Aperts
I live in Iowa(Dubuque )
Welcome to the list serve These people are great I have learned alot
just by
reading the Emails , Give your little girl a hug for me ,and
hope to hear
from you soon >
Beth BOp1912
=========================================================================
Date: Sat, 20 Feb 1999
21:55:32 -0800
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From: "Brent E. Young"
<beyoung@IX.NETCOM.COM>
Subject: Re: Midface Advancement Surgery
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Shirley Tanner wrote:
> Hi Kelly,
> Sorry I haven't answered back sooner,
but I see Michael Shallow
> has
> pretty much said what I would tell you about the RED system.
Dr.
> Fearon is
> also our surgeon for Collin. He is scheduled to have the RED/LaFort
> III done
> on May 25th. We have to go out to Dallas 1 month prior to the
surgery
> to
> visit the team orthodontist who will take the imprint of Collins
mouth
> for the
> dental splint to be made. It has to be an exact fit. Then we
go for
> the
> surgery which I understand takes about 5-6 hours. They make the
> incision from
> ear-to-ear, probably zig-zag as before (when Collin was 4 mos old).
> They
> didn't shave his head at all then so I don't expect them to now.
They
> will
> make the cuts to the bones, across the nose, underneath the eyes
&
> down the
> sides of the cheekbones so that the upperjaw can be slid forward.
The
> distraction device, which looks like "half" of a halo extending to
the
> front
> of the face with a bar that extends from the middle down to the mouth,
> then a
> wire attaches to the end of this bar & goes into the mouth &
attaches
> to the
> dental splint. (I am looking at a picture of a patient with the device
> on) I
> have never seen this thing in person. Anyway, I will have to
tighten
> the
> screws daily for aproximately 4 wks. The device will slowly bring
the
> upper
> jaw forward to the desired point. The device then stays in place
for
> another
> 3-4 weeks until the bones are healed. We will again drive out to
> Dallas & have
> the device removed. I am very excited & anxious about this
surgery. I
> know
> Collin won't look like the same person we have become so fond of
> looking at
> but for his sake I know it is something we need to do for him. There
> are so
> many times I look at him & think "I don't see anything wrong"
but then
> I have
> to come back down from up there & realize he does look different
& for
> him to
> have the best life can offer, we as his parents, must do what we
think
> will
> help him in the future. I hope that made sense. Anyway,
I have been
> told the
> device is painless & the patients don't have problems eating
or
> sleeping with
> this device. This is the part I am having trouble with. But
as we
> have all
> seen with our Apert kiddo's, they are troopers & can handle just
about
>
> anything!!!
> Hope this helps. If you have any more
questions, I will be
> constantly
> calling the doctors office from now until May 25th with questions
for
> them, so
> I may can answer yours.
> My prayers are with all of you
going in for surgery or
> recovering from
> surgery or illnesses.
> Take care,
> Shirley Tanner
> Hartford, AL
Hi Shirley,
Thanks so much for the input. I've gotten so much positive input, that
this is probably the best thing I could've done for myself. I am very
excited to see the "new me" as well as nervous. I have had many
surgeries, but I can'tb remember any of them because I was so young.
My best friend always says "There's nothing wrong with you. Why do you
have to have surgery?" Last night, we were talking about it and she
said. "I just don't want anything to go wrong." I have so many good
friends and I know that if anything happened, not that anything will,
they would be crushed. I know I can count on them for support.
I am known to have a high tolerance for pain. I had a palet split a
couple years ago. According to my mom, and the nurse, I hardly
complained. I like to sleep to avoid the pain.
Well I better be going now. More e-mails to read and reply to and send
to people.
Kelly Spadini
=========================================================================
Date: Sun, 21 Feb 1999
21:52:44 +1100
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From: Carol or Jason
<carolh@HOTKEY.NET.AU>
Subject: Re: seizures
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Hi,
My daughter Ashleigh has had 2 seizures this year and 1 last year.
She
turned blue stopped breathing and I called the ambulance. I completley
lost
it out of panic. She had a CT scan 2 weeks ago to check her brain
and an
EEG which showed nothing so there is no sign of epilepsy that they
can see.
This is so scary to watch. As such after the last episode I was
affected so
badly that I am having councelling at the moment to try and deal with
this
as I lost it so bad last time. The doctor doesn't want to put
her on
medication as this only occurs so rarely.
It happens when she gets sick and her temp goes very high which makes
her
vomit and then everything seems to stop, she goes blue I run around
screaming. They think maybe febrile convulsions but my eldest
son who is
now 18 had epilepsy as a child and grew out of this in his teens had
seizures that were completley different, he was never blue.
Carol (panic stricken)
Timothy Holt wrote:
> First of all, I want to wish Zoey, Billy, and Carlee the best of a
> speedy recovery. These times are the hardest to deal with.
> I am going through my own crisis at this
time..... Day before I
> noticed that Courtney's pupils would roll back in her head, and she
> would almost be still, and would quit breathing. She was motionless,
> which is very rare for a 8 1/2 month old. I took her to the dr
> yesterday. Courtney's peditrician seems to think
she is having silent
> or mini seizures. We are going to have an EEG on Monday.
Her
> peditrician also seems to think that they are due to her head growth.
> We have also noticed the head growth.
> Has any one had this to happen, or have epilepsy with
Apert?
>
> Any and all response will be appreciated!!!!!
>
> Heart broken in NC
> Mechelle
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Date: Sun, 21 Feb 1999
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From: Yonstein@AOL.COM
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Wow, was that a story. I, too, saw the program and yes there was
a child with
Apert that they showed in the feature. I do remember hearing
about Dr. Salyer
from some families who use him. It's truly amazing what can be
done.
Janine
=========================================================================
Date: Sun, 21 Feb 1999
14:08:01 EST
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From: Yonstein@AOL.COM
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Welcome Sheild, Paige and family. I am Janine Krebs and my daughter
Emily is
18 months old with Apert. We have a son Nicholas who is 4 and
a half. I am
sure you will find this listserve as helpful and supportive as we have
over
the past year.
Best wishes,
Janine Krebs
New York
=========================================================================
Date: Sun, 21 Feb 1999
14:14:31 EST
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From: Yonstein@AOL.COM
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Dear Carol:
I have never experienced the seizures with Emily (thank goodness) but
don't be
hard on yourself. I can't imagine what I would have done or would
do if that
happens to her. We can only do the best we can in a given situation
and you
are doing a great job. Don't doubt yourself.
Janine
=========================================================================
Date: Sun, 21 Feb 1999
17:33:28 EST
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From: GSieb91515@AOL.COM
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Jenn-
We saw it too! It made us reconfirm our decision to get a second
opinion when
we did. We are so thankful that we changed from our original cranial
facial
team and went with Dr. Salyer. He is truly amazing. As
you said, most of our
docs are in this very specialized field of surgery.
Ruth:-Please let me know if you would like me to contact the World Cranial
Facial Foundation that is affiliated with Dr. Salyer's group in Dallas
for
Vivi. I think Dr. Salyer does one free op for every paid surgery.
I'm not
100% on this but I know he does something of the sort.
Brenda
Houston
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Date: Sun, 21 Feb 1999
17:40:35 EST
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From: GSieb91515@AOL.COM
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Yes, the child shown on the FOX special that featured Dr. Salyer does
have
Apert Syndrome. Dr. Salyer has a computerized "photo gallery"
(for lack of a
technical definition) of many of his patients. It actually shows
a transition
from how they looked in the beginning through the surgeries to the
end
results. I can't say enough about this incredible doctor.
We are very
blessed to have him for Jonathan's surgeon.
Please let me know if anyone wants any information regarding contacts, etc.
Brenda
Houston
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Date: Sun, 21 Feb 1999
17:43:20 EST
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Welcome Sheila and family from the Sieberts (George, Brenda, Melissa
(9) and
Jonathan with Aperts (2) in Houston, TX.
=========================================================================
Date: Sun, 21 Feb 1999
18:54:58 -0500
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From: Rich Thornquist
<rlthorn@EARTHLINK.NET>
Subject: SSI
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First, I want to apologize for this message, it was intended for Beth
only, but for some unknown reason it came back to me undeliverable.
I'm
not sure why.
Beth,
We have been on SSI since Andrew was only 3 weeks old. They put
us on
it because
I was unable to work since Andrew would be having so many surgeries
so
close
together. They gave us the SSI because of income. Not only
did we
receive SSI
benefits, but through SSI we received MassHealth. Even though
we still
had
insurance through my husband they gave us the MassHealth anyways.
I
think it goes
with SSI. They actually consider it SSDI (for disability).
I'm not
sure where
you live, but call your local SSI office and they can help you out.
You
will most
likely get a case worker, which makes it much easier to ask questions.
They
overpaid us for two months and now we are paying them back, so
technically they
are just taking our monthly payments. I am also back to work
part-time
and our
income is much higher. They do not go by your yearly income,
they
determine your
monthly payments by your monthly income.
Another thing that is possible because you receive SSI is you will get
a
discount
on the telephone bill ($10.00), just call Bell Atlantic. I believe
you
can also
get assistance from heat and electricity. You just need to ask
the SSI
office. I
have not asked for that kind of assistance since I am back working.
Please feel free to e-mail me with any questions. But I had a very good
experience with SSI. The office closest to me is the Framingham
office. I'm not
sure about you. But I do believe there is a Boston number you
can
call. Just
call information.
I hope this helped.
Lynn
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Date: Sun, 21 Feb 1999
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From: Sheila MacDonald
<SMacdo1030@AOL.COM>
Subject: Re: Nice to meet you Beth
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Hi Beth,
It is very nice to meet you! I noticed that you and I are the
same age. I am
very excited to be a part of this network....thank god that their are
people
out there who are sensitive enough to understand the needs of others.
I am looking forward to getting to know you,
Love,
Sheila [Paige's mom]
=========================================================================
Date: Sun, 21 Feb 1999
18:57:56 -0500
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From: Rich Thornquist
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Just to let you all know, I just figured out why my e-mail to Beth
didn't work. I spelt the last name wrong. It would help
if I could get
something right.
Lynn
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Date: Sun, 21 Feb 1999
19:01:32 -0500
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From: Rich Thornquist
<rlthorn@EARTHLINK.NET>
Subject: Re: Midface Advancement Surgery
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Andrea,
They intend to do the same thing with Andrew when he turns 7 or 8.
His
Craniofacial Surgeon also called it a Frontal Orbital Advancement.
Andrew has
already had a Frontal Advancement, and they don't know if he will need
a midface
advancement. Please let me know when all is done. They
will be fixing Andrew's
eyes because his left eye is a little droopy. Good luck with
the surgery. I'm
sure everything will go just fine.\
Lynn Thornquist
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Date: Sun, 21 Feb 1999
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From: Sheila MacDonald
<SMacdo1030@AOL.COM>
Subject: Re: Nice to meet you Janine
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Hi Janine,
You wasted no time to find this support system. With your daughter
only 18
months old, it only took me 4 years. Of course, I only just got
my computer
so I guess any early would have been hard for me. Well, thank
you for the
welcome.
Love,
Sheila [Paige's mom]
=========================================================================
Date: Sun, 21 Feb 1999
18:58:52 -0500
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From: foster <foster@ICONTECH.COM>
Subject: Update
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Just wanted to let you all know that Billy is doing somewhat better.
He is
still in the hospital and his fever is back up today. We have some
tests to
do tomorrow and then they may have some answers for us. I want to thank
you
all for your kind words and prayers. Sorry I haven't been able to read
the
e-mails from the last few days so I'm not up on what is happening but,
I
hope everyone is well.
Karen(PA(
P.S. Collen I'm sorry I have not returned your call yet but, I will
call soon.
=========================================================================
Date: Sun, 21 Feb 1999
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From: Sheila MacDonald
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Subject: Re: medical miracles
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Hi Brenda,
I would be very interested in finding out more about Dr.Slayer,
he sounds
very interesting. When was this program on? Do you think
that I could send
away for a transcript?
Love,
Sheila {Paiges mom}
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Date: Sun, 21 Feb 1999
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From: Sheila MacDonald
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Subject: Re: SSI
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Hi Lynn,
I was reading about what you were saying about SSI payments.
Just to let you
know I had a very bad experience with this. I also received SSI
paymentss for
my daughter, Paige, then out of the blue they said that they
over payed us
the entire years worth of payments. I don't want to tell you
how upset I was
when they expected us to repay them back. I also received Mass
Health at the
same time even though we also had Heath insurance. To make a
long story short
I fought it and after about 3 months won the battle, I did not have
to pay
them back and I kept the Mass Health.
Love,
Sheila [Paige's mom]
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Date: Sun, 21 Feb 1999
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From: ETolson643@AOL.COM
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Lynn
Thanks for the information about SSI. We will be applying when
Tim turns 18
because we do not presently qualify based on our income, which is the
determining factor prior to Tim's 18th birthday. I hope he will
be able to
get SSI in October when he turns 18.
Beth Tolson
=========================================================================
Date: Sun, 21 Feb 1999
19:46:32 -0500
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From: Rich Thornquist
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Unfortunately, I did not see this show on Fox. Is there any possiblity
in hoping
that someone taped it. If so, I would pay for a copy and the
shipping. I would
love to see it.
Lynn
=========================================================================
Date: Sun, 21 Feb 1999
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From: ETolson643@AOL.COM
Subject: Re: Midface Advancement Surgery/RED
system
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Hello to all
We just met with Tim's (17yrs.) craniofacial team at Children's in Boston.
Tim had his midface advancement two years ago and looks great.
The plan now
is for a LeForte I which is the advancement of the upper jaw in an
attempt to
align it with the lower jaw, give more of an upper lip, and improve
eating and
breathing. This procedure takes about 6 hours (his midface took
17) and
wouldn't require the wiring of his jaw but would involve a liquid diet
for a
few weeks and then soft foods for a few months. I asked Dr. Ferraro
(oral/plastics) what he knew about the RED system. He knew it
was a
distraction-type approach but said it wouldn't be done with a LeForte
I which
is what Tim needs next. He has heard of them used in conjunction
with a
LeForte III. He said it wouldn't be a consideration for Tim now.
His upper
jaw is too thin and wouldn't be stable enough. He also said that
it requires
two procedures, two intubations, two recoveries, etc. He said
that at
Children's they have used distraction methods in a few cases but not
very
often. I guess I still have some questions as to why they don't
use it more
often. Also, at Children's they now hold a philosophy that the
midface should
be held off until the early teens. In earlier years they tried
doing them on
younger children and found that they had to repeat them later on.
In any event, we are going down the orthodontic road and thinking about
this
last procedure. Tim asked some questions at this appt...something
we have
really been encouraging him to do so that he can be part of the decision.
He
doesn't HAVE to have this last procedure done. I am always left
with the
question: Does the function and appearance improve enough to
justify another
surgery????
Beth Tolson
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Date: Mon, 22 Feb 1999
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: medical miracles
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You realise this is very frustrating for someone who didn't see the programme!!
>We saw it too! It made us reconfirm our decision to get a second
opinion when
>we did. We are so thankful that we changed from our original cranial
facial
>team and went with Dr. Salyer. He is truly amazing. As
you said, most of our
>docs are in this very specialized field of surgery.
What did they show? and What is it that Dr Salyer does that is different and so much better than the others?
Ann
NZ
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Internet safe haven for Apert Syndrome
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From: Michael Sharrow
<msharrow@CAMALOTT.COM>
Subject: Re: Medical Miracles
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Hi Folks...Yep...I saw it, too....uh...the show with Dr. Salyer.
Well, it
truly was an amazing feat for that particular team to accomplish what
they
did....They truly are very good Doctors in the field...BUT....there
are also
OTHER very good teams out there that have achieved the same level of
accomplishments. They just didn't make it on that particular
show....(by
the way, I didn't like the fact that they made it SHOCKING medical
videos).
You'll feel it when the team is right....Get a second opinion, if you
feel
the need. But first ask the team if they have any before and
after pictures
of former patients they've helped. Maybe it will amaze
you just as the
show the other night did. It might also save you alot of extra
"beating
around the bush". This is just my opinion, mind you.......so
don't gang up
on me now...hehehe....
Your friend, Michael (Talitha's dad)
=========================================================================
Date: Sun, 21 Feb 1999
20:18:16 -0600
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Randy & Deb
Picht <rldpicht@INFO.STARPOINT.NET>
Subject: Re: Nice to meet you Sheila
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Beth,
My name is Deb and I am 37 years old with a 9 year old daughter with
Aperts.
I see that you are from Iowa. I live in Marshall, MN. I
have no idea how
far away you are. It would be great for my daughter to meet someone
older
than her with Aperts. In this part of the country you don't hear
much about
it. I do not think there are too many cases of Aperts in our
area. She was
born at Sioux Valley Hospital in Sioux Falls on 7/29/89.
We just got the internet and Teeters Page is great. If anyone
wants to send
us a message please feel free. Lisa has had numerous surgeries
and is doing
fine. She is mildly retarted and in Special Ed classes because
she was also
born without the Corpus Collosum (part of the brain)
Thank you
Deb Picht
-----Original Message-----
From: BOp1912@AOL.COM <BOp1912@AOL.COM>
To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM>
Date: Saturday, February 20, 1999 11:49 PM
Subject: Re: Nice to meet you Sheila
>HI Sheila
> My name is Beth ,I am 34 yrs old and have Aperts
I live in
Iowa(Dubuque )
>Welcome to the list serve These people are great I have learned alot
just
by
>reading the Emails , Give your little girl a hug for me ,and
hope to hear
>from you soon >
>
Beth BOp1912
>
=========================================================================
Date: Sun, 21 Feb 1999
21:01:38 -0600
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
Internet safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: Michael Sharrow
<msharrow@CAMALOTT.COM>
Subject: TV
Comments: To: Crouzon Discussion List <crouzon@u.washington.edu>
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If you just received this, turn it to Discovery Channel...you might
want to
see this.