>Bill,
>Collin is 6-1/2 yrs old & has always had the "shoe" problem. Nearly
every pair
>of shoes we have bought for Collin have been from Stride Rite. They
make a
>wide width shoe & also in a soft leather that conforms to the
shape of the
>foot better. JC Penny carries Stride Rite but find a better
selection at a
>"Stride Rite" store.
We'll second that. Nicole has been wearing Stride Rite shoes for
a couple
of years and they seem to fit her OK. Like the Grahams, we use
a small
family owned store where they take the time to make sure the shoes
fit
properly and have replaced, free of charge, some that have worn too
quickly.
Frank Contrino
=========================================================================
Date: Sun, 22 Nov 1998
14:48:21 EST
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From: Nodrmat26@AOL.COM
Subject: Re: question?
Mime-Version: 1.0
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In a message dated 11/19/98 7:50:29 PM Central Standard Time, tlh@NETDOOR.COM
writes:
Tom~
I don't what either of these things you mentioned are. Usually,
when I've
been sent pictures, I hit "download" and they just pop up on my screen.
???
<< (if you're using Eudora or Outlook Express) >>
Christina
San Antonio
=========================================================================
Date: Sun, 22 Nov 1998
15:28:44 -0600
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From: Laurie Bailey
<jkb@ELPASO.NET>
Subject: Re: Surgery Question
MIME-Version: 1.0
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Hi!
My name is Laurie Bailey. Our son, Jacob, is 2 1/2 years old and has
Apert
Syndrome. I also have searched for shoes. The best ones I've found
are any
shoe that has the place where the laces tie open and all the way down
to
the end of the shoe. I know this is a rough description. The tongue
of the
shoe shows all the way to the end of the shoe. It allows for more expansion
and gives their feet more room. I've been able to find this style in
Reebok.
Hope it helps.
Laurie
jkb@elpaso.net
----------
> From: WCMurph@AOL.COM
> To: APERT@LISTSERV.AOL.COM
> Subject: Surgery Question
> Date: Thursday, November 19, 1998 6:09 PM
>
> Hello to all,
>
> Our son, Sammy, is almost 11 months old now and hasn't had a cranial
surgery,
> yet. His doctors say that he is progressing "normally" and
there is no
need
> for surgery just yet as he hasn't shown any signs of inter-cranial
pressure.
> In fact, they are overwhelmed by how well he has done up to now.
Sammy
has
> met all the "normal kid" milestones so far, so we're not too concerned
about
> retardation. My wife and I were just curious to find out if
anyone else
has
> delayed their kid's cranial surgery this long. Right now, he's
planned
for a
> suture release in February--he'll be 14 months by that time.
Every
article
> I've read has said that he needs surgery by the time he's 1 yr old.
Has
> anyone else waited this long?
>
> Second question. Anyone have any recommendations for shoes
in infant
size 2
> 1/2 to 3? Sam has a thick instep (from the floor to the top
of his foot)
> which makes finding the right fitting shoe a problem--the fact that
he
has
> funny toes doesn't help either. Has anyone found good shoes
for a thick
> insole?
>
> Thanks in advance,
>
> Bill Murphey
> Little Rock, AR
> wcmurph@aol.com
=========================================================================
Date: Sun, 22 Nov 1998
20:36:12 EST
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From: GSieb91515@AOL.COM
Subject: Re: Surgery Question
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Jenn,
Wow, how did you find this place. You are so lucky to have a great
place like
that to get shoes. Believe it or not, I've had my best luck at
Walmart. They
have wide sizes. I've bought stride rite's and paid a fortune
and then I've
had $10-15 great buys from Walmart and Target. I'm sure though
as he gets
older it will get tougher. Hope all is going well. We are
headed for surgery
#6 in the a.m. Talk to ya later.
Brenda
Houston
=========================================================================
Date: Sun, 22 Nov 1998
20:39:45 EST
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From: GSieb91515@AOL.COM
Subject: Re: TRAVEL OUT OF STATE
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Belinda,
We don't go out of State but we do travel 4 hrs or so to Dallas for
Jonathan's
cranial surgeries and related appts. It was the best decision
we made to
travel to an area where there is a cranial facial team with experts
who handle
these types of surgeries on a daily basis and really are experienced.
We were
willing to go anywhere but decided after several consultations with
various
doctors that we would go with Dr. Salyer's team in Dallas. We
have been very
happy with our decision. Good luck and let me know if you need
any phone
numbers of teams around the country.
Brenda
Houston
=========================================================================
Date: Sun, 22 Nov 1998
19:40:50 -0600
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From: Ize <ize@MASTER.CEAT.OKSTATE.EDU>
Subject: FGFR2
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
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Hello to all and welcome to the new members!!!
We are the Ize family. We
have three years old twin boys Rafael and
Felipe. Felipe was born with Apert syndrome. He had 13 surgeries. His
craniofacial surgery was done when he was 4 months old, then we started
hands surgeries. Felipe had all his fingers separeted on both hands
before the age of two. He is doing really good at pre- school, he loves
his teachers, friends and even the therapists that work with him. Our
concern right now is that Felipe doesn't talk yet. He says mama, papa,
daddy, banana and he also has lots of different sounds witch the speech
therapist said is really good. Now, one interesting thing is that he
started talking when he was about 9 - 10 months old but then when all
the surgeries started, he decided to quit talking. Does it happened
to
any of you??? Felipe knows everything that he wants like, watching
TV,
eating, drinking, going outside to play, etc....he just pushes us to
everywhere that he wants to go and makes sounds, approving or
disapproving. We decided to put him in a special program in School
because he is having all the therapies that he needs right now. Then
the
teacher told us that when he turns 5 years old he will go to a regular
classroom. We are really happy with the School program, the way that
they work with Felipe and we have noticed that he is improving alredy.
The classrom has just 4 kids, counting with Felipe. It is really good
because he can have all the attention that he needs. The first thing
that he does when he arrives at School is to hang up his back pack
and
then to sit in front at the computer and plays games ( he loves it).
Felipe started walking at the age of 13 months old. At that time we
thought that he would never make it. We love to hear from all of you
and
your experiences and specially from the adults with Apert's. I also
woud
like to share an interesting site with you, just in case you dont know
yet.
http://www.uwcm.ac.uk/uwm/mg/search/127273.html
Sorry for being long. I hope
that everybody is recovering well from
there surgeries. You are always in our thoughts and prayers.
Happy Thanksgiven to all,
Claudia Ize.
=========================================================================
Date: Sun, 22 Nov 1998
19:56:29 -0600
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From: Ize <ize@MASTER.CEAT.OKSTATE.EDU>
Subject: FGFR2
MIME-Version: 1.0
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sorry, I missed a letter on the other one. Here goes the right one.
http://www.uwcm.ac.uk/uwcm/mg/search/127273.html
Claudia Ize
=========================================================================
Date: Mon, 23 Nov 1998
09:35:11 -0500
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From: Don Sears <dsears@SCRS.STATE.SC.US>
Subject: Re: Jacob's post-op
MIME-Version: 1.0
Content-Type: text/plain
Here's the direct address:
http://www.apert.org/archive.htm
> -----Original Message-----
> From: Judy Amerman [SMTP:jamerman@UTI.COM]
> Sent: Saturday, November 21, 1998 3:55 PM
> To: APERT@LISTSERV.AOL.COM
> Subject: Re: Jacob's post-op
>
> Claudia,
>
> Go to Teeter's page and click on the Archives
>
> Judy
>
> I have a question for the group, is there anyway to read old letters,
> so
> > you can familiarize yourself with some of the members or a list
that
> we
> > can refer to. Or maybe a home page with archive letters.
I think it
> > would be beneficial to people including myself, who are fairly
new
> to
> > the group. Possibly, a web site? Im not sure how to go about
it.
> Any
> > ideas? or is it already done, and I just dont know how to access?
> Let
> > me know...Thanks again Jenny,
> > Claudia
> >
> >
> >
> > > waoting.. I am prayng for joanne and christine and everyone else.
=========================================================================
Date: Mon, 23 Nov 1998
11:11:41 -0500
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From: Ryan Bradley
<Bradleys_r@COMPUSERVE.COM>
Subject: Re: question?
MIME-Version: 1.0
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Liz,
We received your picture. Have a great birthday.
The Bradley's
=========================================================================
Date: Mon, 23 Nov 1998
16:15:02 -0500
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From: ROBIN L HILL
<CARMENRAE@PRODIGY.NET>
Subject: Welcome Everyone!!!!
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Hello to everyone and welcome to all of the new members. I am
sorry to say
we have been so busy lately that we have gotten very behind on EMAIL.
We
are Mike, Robin, and Carmen Rae Hill from Newnan, Georgia (30 miles
southwest of Atlanta). Our little Carmen Rae was born on January
18, 1998
with Apert Syndrome. She has had 3 surgeries so far. A
shunt placement (3
months), cranial surgery (5 months), and her thumbs released (8 months).
She will be having her pinkies released some time in February.
I think you
will all love it here.
It has been a great source of support for us!
Hope everyone has a wonderful Thanksgiving. I have made three
trips to the
grocery store to buy supplies and will probably make several more before
it's over.
Robin Hill
P.S. Please check out our little one's picture shoot in the
clubhouse!!!!!!
=========================================================================
Date: Mon, 23 Nov 1998
17:24:37 EST
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From: ETolson643@AOL.COM
Subject: Re: shoes
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Hello Everyone
Shoes have always been a challenge for us as well. Tim seems to
have good
luck with Nike velcro sandals and New Balance sneakers...EEEE width.
Beth Tolson
=========================================================================
Date: Tue, 24 Nov 1998
11:16:34 +1100
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From: Carol or Jason
<carolh@HOTKEY.NET.AU>
Subject: Fw: Hand Surgery
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Hi Everyone,
Well Ashleigh goes in for her hand Surgery on Thursday hopefuly, she
has had
a stomach virus on the weekend and I started to think thats right now
she
decides to get sick but she has been ok since yesterday and kept food
down
so hopefully all will go as planned. She will also be getting
the tear
ducts done so her eyes dont tear all the time has anyone had
this done and
did it help?????
Back in a few days
Carol
=========================================================================
Date: Mon, 23 Nov 1998
21:19:42 EST
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From: Jenngram@AOL.COM
Subject: Re: Hand Surgery
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Hope all is well w/ Johnathon and surgery #6....Boy they accumulate
fast,
don't they???
And I found the shoe store by luck; my neighbor uses it for her nephew
who has
wide feet. But this place has been around forever, she took her kids
there as
well. So perhaps asking around or looking in the phone book would be
a good
start.
Jenn
=========================================================================
Date: Mon, 23 Nov 1998
21:34:51 EST
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From: Frank & Annette
Contrino <contrino@BUFFNET.NET>
Subject: Re: question?
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
>In a message dated 11/19/98 7:50:29 PM Central Standard Time, tlh@NETDOOR.COM
>writes:
>Tom~
>I don't what either of these things you mentioned are. Usually,
when I've
>been sent pictures, I hit "download" and they just pop up on my screen.
???
><< (if you're using Eudora or Outlook Express) >>
>Christina
>San Antonio
>
Christina,
Tom is referring to a couple of email clients (programs you use to read
email). There are a wide variety of email clients, some of which
will limit
the size of a message they will accept. Your email provider (Internet
Service Provider) may also limit the size of messages they will handle
(sometimes this limit is 1 Megabyte). The reason you may not
be able to
access pictures could be related to a limitation like this. It
could also
be because of the picture file format. Most Internet browsers
will support
'jpg' format, which is a relatively compact file format. Other
formats
which you may be able to view are gif, bmp, tif, and others (there
are a
boat load of formats, some of which are proprietary). Often you
will have
to 'associate a program' to open these file formats. Many file
types are
associated for you as defaults in Windows. You can manually associate
a
program with a file type in Windows95 by double clicking on 'my computer',
selecting view and then selecting options, then clicking on the 'file
types'
tab. From there you can change what programs act upon a particular
file
type. You can also tell an internet browser (like Explorer or
Netscape)
what programs should act upon certain file types by clicking on 'view,
then
options, then programs. For now, Don has solved the problem by
providing
the Clubhouse where he'll have files converted to jpg format.
George Starr took the bmp format picture and loaded it into a graphics
manipulation program (for lack of a better generic term) and saved
it in a
jpg format. A lot of software allows you to read one format and
convert/save to another.
Do I have you confused enough yet???
Frank Contrino
contrino@buffnet.net
=========================================================================
Date: Mon, 23 Nov 1998
19:19:05 -0800
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From: Claudia Salazar
<pcbaas@HOME.COM>
Organization: @Home Network
Subject: Re: Jacob's post-op
MIME-Version: 1.0
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thanks Don
Claudia Salazar
Don Sears wrote:
>
> Here's the direct address:
>
> http://www.apert.org/archive.htm
>
> > -----Original Message-----
> > From: Judy Amerman [SMTP:jamerman@UTI.COM]
> > Sent: Saturday, November 21, 1998 3:55 PM
> > To: APERT@LISTSERV.AOL.COM
> > Subject: Re: Jacob's post-op
> >
> > Claudia,
> >
> > Go to Teeter's page and click on the Archives
> >
> > Judy
> >
> > I have a question for the group, is there anyway to read old letters,
> > so
> > > you can familiarize yourself with some of the members or a list
that
> > we
> > > can refer to. Or maybe a home page with archive letters.
I think it
> > > would be beneficial to people including myself, who are fairly
new
> > to
> > > the group. Possibly, a web site? Im not sure how to go
about it.
> > Any
> > > ideas? or is it already done, and I just dont know how to access?
> > Let
> > > me know...Thanks again Jenny,
> > > Claudia
> > >
> > >
> > >
> > > > waoting.. I am prayng for joanne and christine and everyone
else.
=========================================================================
Date: Mon, 23 Nov 1998
19:33:13 -0800
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From: Claudia Salazar
<pcbaas@HOME.COM>
Organization: @Home Network
Subject: Re: Fw: Hand Surgery
MIME-Version: 1.0
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Content-Transfer-Encoding: 7bit
Will put you in our prayers, good luck on your surgery Thursday.
Salazar family
San Diego
Carol or Jason wrote:
>
> Hi Everyone,
>
> Well Ashleigh goes in for her hand Surgery on Thursday hopefuly,
she has had
> a stomach virus on the weekend and I started to think thats right
now she
> decides to get sick but she has been ok since yesterday and kept
food down
> so hopefully all will go as planned. She will also be getting
the tear
> ducts done so her eyes dont tear all the time has anyone had
this done and
> did it help?????
>
> Back in a few days
> Carol
=========================================================================
Date: Tue, 24 Nov 1998
06:45:09 -0600
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From: "D. Jefferson"
<djeff@MIDWEST.NET>
Subject: Re: Shoes
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
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We have recently found a brand that many stores carry that work perfectly
for Seth called Sketchers. The skate board punks like them.
They are wide
and have quite a lot of cushion. They come in both children and
adult
sizes. I tried on a pair and loved them. I wear very wide shoes
because of
damage I did to my right foot years ago.
Dori A. Jefferson
djeff@midwest.net
=========================================================================
Date: Tue, 24 Nov 1998
07:07:55 -0600
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From: "D. Jefferson"
<djeff@MIDWEST.NET>
Subject: Re: Shoes, oops
MIME-Version: 1.0
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I made a mistake, the brand of shoe is SKECHERS.
Dori A. Jefferson
djeff@midwest.net
=========================================================================
Date: Tue, 24 Nov 1998
07:53:53 -0600
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From: Judy Amerman
<jamerman@UTI.COM>
Subject: Re: Shoes, oops
MIME-Version: 1.0
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Dori,
What store are you finding them at?
Judy
----------
> From: D. Jefferson <djeff@MIDWEST.NET>
> To: APERT@LISTSERV.AOL.COM
> Subject: Re: Shoes, oops
> Date: Tuesday, November 24, 1998 7:07 AM
>
> I made a mistake, the brand of shoe is SKECHERS.
>
>
> Dori A. Jefferson
> djeff@midwest.net
=========================================================================
Date: Tue, 24 Nov 1998
09:56:20 -0800
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From: "Brent E. Young"
<beyoung@IX.NETCOM.COM>
Subject: Re: Shoes
MIME-Version: 1.0
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D. Jefferson wrote:
> We have recently found a brand that many stores carry that work
> perfectly
> for Seth called Sketchers. The skate board punks like them.
They are
> wide
> and have quite a lot of cushion. They come in both children
and adult
>
> sizes. I tried on a pair and loved them. I wear very wide shoes
> because of
> damage I did to my right foot years ago.
>
> Dori A. Jefferson
> djeff@midwest.net
Hi from Kelly!
In addition to skechers, I have also found Vans and Airwalks that are
plenty wide enough for me. A couple years ago, everyone was wearing
these kind of shoes and so I started out with sketchers and, then
decided to try out other kinds as well, and found Vans. I liked my
first
pair of vans so much, that I got a second pair.
For the summer, I have found sandals by Nike and reebok to be perfect
for me. The Reebok ones were the black & white massage sandals
and the
nike ones were the navy blue or black sandal. Personally I like the
nikes better after having the reeboks because
the reeboks had the massage footbed and they bothered my feet sometimes.
These sandals come in most of the name brands for tennis shoes(nike,
reebok, adidas, etc.) and are available in kids sizes as well as adults.
Kelly Spadini
=========================================================================
Date: Wed, 25 Nov 1998
14:32:04 +1300
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Osteopathy
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Kia Ora
Does anyone have experience/knowledge of osteopathy with "our" children? A woman I work with took her daughter to an osteopath because she was having constant ear infections and kept falling over and walking into things - apparently she has had few infections since then and her balance is vastly improved, she's a real little athlete now.
Is there any added "risk" with osteopathy because of the abnormal fusion and bone structure of our children?
Experience and opinions welcomed.
Cheers
Ann
NZ
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Date: Tue, 24 Nov 1998
20:56:01 EST
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From: GSieb91515@AOL.COM
Subject: Re: note
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Marilyn, Cristy and Carlee--
Welcome to our great big family (growing by leaps and bounds).
We are the
Sieberts (George, Brenda, Melissa and Jonathan) in Houston, TX.
Jonathan will
be 2 on Dec. 6 and he just had his 6th surgery on Monday the 23rd.
This one
was to finish releasing on his left hand and to also add ear tubes.
We have
been fortunate in that we have only had to use one side of the groin
so far to
get full skin flaps for the grafts. The release went very well
and we have
function in all "5" fingers. The ENT said that his ears had a
tremendous
amount of thick fluid behind the drums and that the tubes should make
a big
difference. We're hoping that he will begin to talk now that
he will be able
to hear the sounds appropriately. He didn't have many ear infections
so I
didn't make the ears a big issue. But apparently you can still
have a big
fluid build up with out the infections. We hope that baby Carlee
is doing
well from her last surgery and that we hear from you soon.
Best wishes and welcome.
Brenda
Houston
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Date: Tue, 24 Nov 1998
21:02:56 EST
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From: GSieb91515@AOL.COM
Subject: Re: Osteopathy
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Ann,
Can't help with that one but we did just have tubes put in so I'm hoping
they
will make a big difference with the speech part. Jonathan does
tend to fall
forward often. I attribute it to his shoes. I sometimes
get them a little
larger in the length to accomodate his width. I'm interested
to hear more on
this subject.
Brenda
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Date: Tue, 24 Nov 1998
20:24:06 -0800
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From: Claudia Salazar
<pcbaas@HOME.COM>
Organization: @Home Network
Subject: Re: note
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Brenda,
Glad to hear your surgery went well. Tubes should make a big
difference
for Jonathon, have you had his hearing tested? Just a tip for the ear
tubes, instead of buying those expensive ear molds, use silly putty.
It
works great!!!!! When our pediatrician suggested silly putty, I thought
he was joking. After 8 years of tubes, with many tube replacements
thats
what we use in the shower and when swimming. It will help prevent
ear
infections. Good luck on the hearing and speech.
Claudia and Allie Salazar
GSieb91515@AOL.COM wrote:
>
> Marilyn, Cristy and Carlee--
>
> Welcome to our great big family (growing by leaps and bounds).
We are the
> Sieberts (George, Brenda, Melissa and Jonathan) in Houston, TX.
Jonathan will
> be 2 on Dec. 6 and he just had his 6th surgery on Monday the 23rd.
This one
> was to finish releasing on his left hand and to also add ear tubes.
We have
> been fortunate in that we have only had to use one side of the groin
so far to
> get full skin flaps for the grafts. The release went very well
and we have
> function in all "5" fingers. The ENT said that his ears had
a tremendous
> amount of thick fluid behind the drums and that the tubes should
make a big
> difference. We're hoping that he will begin to talk now that
he will be able
> to hear the sounds appropriately. He didn't have many ear infections
so I
> didn't make the ears a big issue. But apparently you can still
have a big
> fluid build up with out the infections. We hope that baby Carlee
is doing
> well from her last surgery and that we hear from you soon.
>
> Best wishes and welcome.
>
> Brenda
> Houston
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Date: Wed, 25 Nov 1998
21:50:26 +1300
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Ears
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Hi Brenda
> He didn't have many ear infections so I
>didn't make the ears a big issue.
You and me both! Also, I was lulled into a false sense of security
by the hearing testers - I asked to have her ears tested because
she wasn't responding very well for a while and we didn't know whether
it was just where she was at the time or if it was her hearing. They
asked if she had had a cold because there was "some" fluid present, but
didn't indicate it was anything significant.
The paediatrician was NOT impressed with what he saw when he saw those
same ears shortly after, and Amy had grommets inserted not long after that.
Apparently she had had the problem for quite some time, but as with your
experience, it wasn't presenting as an ear infection that caused her any
distress, so we weren't aware there was a significant problem.
With everything else our littlies have to go through it is very easy to miss less obvious things. I certainly would now recommend the ears are checked by a specialist regularly. Because of the unusual shape of the eustachian tubes with our children they often do not drain well, the fluid builds up, and infection may develop.
Regards
Ann
NZ
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Date: Wed, 25 Nov 1998
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From: Jenngram@AOL.COM
Subject: Re: Osteopathy
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my husband is actually an osteopathic physicain....or will be in May,
however
his opinions and that of our doctors do not vary at all
Jenn(Tampa/St. Pete)
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Date: Wed, 25 Nov 1998
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From: Jenngram@AOL.COM
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I may have misunderstood the previous e-mail. Joe is an osteopathic
physicain,
but he is a surgeon. He merely has a DO behind his name instead of
an MD...and
has gone through all the same training, plus a bit extra in osteopathic
techniques (which hes not real sure of the benefit). Anyway, he is
not an
"osteopath" in the terms of a specialist that practices in just that
field.
Sorry for the confusion
Jenn(Tampa/St. Pete)
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Date: Wed, 25 Nov 1998
10:08:29 -0500
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From: baconsmith <bluenose@TELUSPLANET.NET>
Subject: Re: Ears
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'Morning everyone. Pat here, lurking. Just a quick mention
of the silly
putty for ears if the kids have tubes .... I have heard that in areas
where
the temp gets really hot (like you folks in the South), the silly putty
can
actually melt and get stuck in there. You want to make sure that
if the
kids are at the beach (that is out doors and in the sun) that the silly
putty doesn't melt in the ear canal.
We use the soft silicone ear plugs that are pliable and mold into the
ear.
EvaJessie was often mis-diagnosed with ear infections from fluid build
up --
that is, her docs often said her ears were infected when in fact all
it was
was fluid. Two differing opinions -- one from the family doc
and the other
from the ENT. But I guess it can make the drums appear red and
inflamed.
So she had a few rounds of anti-biotics that weren't really necessary.
But
she hasn't had an ear infection now for about three years.
Glad to hear Jonathon's hand surgery went well.
Hope everyone else is doing well.
Bye for now.
Pat
email to: bluenose@telusplanet.net
IM: onlypeach
www.widesmiles.org/gallery/peach/
One cannot kill time without injuring eternity. HD Thoreau
Civil Disobedience
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Date: Wed, 25 Nov 1998
11:05:13 EST
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From: Cristy Williams
<CARLEE0604@AOL.COM>
Subject: Re: note
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Dear Brenda.
We got your note. Glad to hear Jonathon's surgery went well.
Carlee will
have her 2nd hand surgery on jan. 8 to release her index and pinkie
fingers.
she has occupational therapy now to try to get function in her thumbs
that
were released in october. she also has a physical therapist.
They both say
Carlee is doing great.
She will be 6 mos . old on Dec. 4th. So far we haven't had any
problems with
here ears. They were tested when she was 2 mos. old. We
have to go back soon
to have them retested. I had a neat experience the other night(sunday).
My
neice works at sears and they were having an employee and families
sale. We
were waiting for them to open the doors. i noticed a little boy
who looked
kinda like Carlee. He had an indention in the bone that
went ot his nose .
I also noticed his hands looked a little different but not as severe
as
Carlee's. I told my sister I was going to ask his mother if that's
what he
had. My sister was like wait until you know for sure that's what
is wrong. I
was like "no". I didn't htink his mother would be offended.
so I approached
her and asked"excuse me does your baby have aperts syndrome"?
she said "yes,
how did you know"? then I told her about Carlee. We were
both so excited to
meet someone else. she lives in jacksonville which is less than
10 miles from
us. Her son's name was Brian and he ws 13 mos. old. He had just
had his first
cranial surgery and looked great. He had one small scar from
ear to ear
across his head. It reallly gave me encouragement to see him
after a cranial
surgery. His mother said his head was very swollen for a couple
of days. But
he was doing great. We thought it was so neat to just run in
to one another.
Well IU hope everyone out there is doing great and recovering beautifully
if
they recently had asurgery.. please stay in touch with us.
we love to hear
from you all.
CRISTY AND CARLEE
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Date: Wed, 25 Nov 1998
20:26:02 +0000
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From: "J. G. Lindamood"
<chanan8@JUNO.COM>
Subject: shoes, ears etc..
Hello all and Happy Thanksgiving to you!
Thanks Dori and Kelly for the input on the shoes. My family has
sworn
off shoe buying with me since I was old enough to do it for myself.
It
has been an most unpleasant chore for us all!!! My brother's
wedding had
me all over the state (okay, a brief exaggeration) looking for a nice
pair of flats that wouldn't trip me half way down the isle, or heaven
forbid, when I went up to the alter to read the scripture! None
the
less, I have resorted to wearing tennis shoes for the most part.
Thankfully, I have an employer that encourages comfortable shoes!
When I
was younger my parents took me to a store similar to the one Jenny
talked
about called Max's. I can relate to the "same person to wait
on you
every time" preference. It was nice to go back as an adult and
have the
older than dirt man remember me!!! The problem now is those services
cost more than my rent! And I am the one paying the bill!
So, any input
on shoes is much appreciated. Where did you find the brands you
mentioned?
Another regular visit for me was to see the ENT Specialist. A
man I was
not fond of at all! Not to mention the vacuum cleaner he used
to suction
my ears. It was bad enough to have a painful infection without
that
thing pulling not only the wax, but the parts that were attached!!
I
had tubes in twice and since my septoplasty surgery (to straighten
the
cartilage in my nose) the ear problems are few and far between.
Ann, I'm not sure what relation osteopathy and ear infections have with
each other.. can you elaborate?
=========================================================================
Date: Wed, 25 Nov 1998
21:50:24 -0500
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From: foster <foster@ICONTECH.COM>
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Happy Thanksgiving to all. I hope everyone enjoys this wonderful day
and can
spend it with their friends and family.
Karen (PA)
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Date: Wed, 25 Nov 1998
19:16:07 -0800
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From: "Brent E. Young"
<beyoung@IX.NETCOM.COM>
Subject: Kelly Spadini has a new baby
brother!!!
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Hi from Kelly!
I have some great news to share with all of you. My baby brother was
born last night at
12:41 AM. He weighed 8 lb. and 6 oz. He was 21 inches in length. I
went
and saw him in the hospital today and he is a sweetie. I can't wait
to
see him again. He's not even 24 hours and already I love him so much.
You can definitely say I am a very proud big sister(for the 2nd time).
Bye,
Kelly
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Date: Thu, 26 Nov 1998
16:34:11 +1300
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: shoes, ears etc..
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>Ann, I'm not sure what relation osteopathy and ear infections have
with
>each other.. can you elaborate?
Hey, I'm the one asking about osteopathy - don't ask ME anything technical!!
My simplistic brain interprets this as - osteopathy=manipulation of the skull bones=they go into the position they are meant to be in (if they weren't in place in the first place)=ears drain better.
Cheers
Ann
NZ
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Date: Wed, 25 Nov 1998
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From: Joseph Chan <jchan7@PACBELL.NET>
Subject: Re: Kelly Spadini has a new
baby brother!!!
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Congratulations to Kelly and family on your new little one!
Happy thanksgiving to all!
=========================================================================
Date: Thu, 26 Nov 1998
10:16:53 EST
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From: Nodrmat26@AOL.COM
Subject: Zoey's Surgery...A Success!!...I
think!
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Zoey's Mom here. Just wanted to let everyone know that Zoey came
through
surgery just fine on Tuesday (24th). She was a little more cranky
this time
than in the past. I guess because they released the rest of her
fingers on
her right hand and she is most definately right handed! Poor
baby. The
surgeon never came out to talk to me, so I won't know until Monday
how well it
went. Anyway. Another surgery survived!!! Next one
will be on her little
head in February 99. Bye everyone and have a very nice Thanksgiving.
Christina
San ANtonio
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Date: Thu, 26 Nov 1998
21:06:46 -0000
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From: Steve Stewart
<steve@FSTEWART16.FREESERVE.CO.UK>
Subject: Speech
MIME-Version: 1.0
Content-Type: multipart/alternative;
boundary="----=_NextPart_000_00BB_01BE1980.AD36A360"
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Hello My husband has just introduced me to the internet and for
some =
weeks we have been reading your emails
Our son Ryan has Apert syndrome and is 5 years old and at our local
=
mainstream school.
He has had 1 cranio op on the back of his skull to make more room and
8 =
ops on his hands.
Ryan's fingers are pretty poor, he has 3 fingers and a thumb on each
=
hand and quite limited movement
although its amazing what he can do and how quickly one gets use to
=
them.
Our main concern at present is his poor speech articulation and his
lack =
of confidence in talking to those
outside the family unit. Unfortunately speech services are not great
in =
our area and I have considered going
back to college myself. Any information or advice gratefully received
=
about how you approach this in the states.
Karen Stewart
------=_NextPart_000_00BB_01BE1980.AD36A360
Content-Type: text/html;
charset="iso-8859-1"
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<!DOCTYPE HTML PUBLIC "-//W3C//DTD W3 HTML//EN">
<HTML>
<HEAD>
<META content=3Dtext/html;charset=3Diso-8859-1 =
http-equiv=3DContent-Type>
<META content=3D'"MSHTML 4.72.3511.1300"' name=3DGENERATOR>
</HEAD>
<BODY bgColor=3D#ffffff>
<DIV><FONT color=3D#000000 size=3D2>Hello My husband
has just =
introduced me to=20
the internet and for some weeks we have been reading your =
emails</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2>Our son Ryan has Apert syndrome
and =
is 5 years=20
old and at our local mainstream school.</FONT></DIV>
<DIV><FONT size=3D2>He has had 1 cranio op on the back of his
skull to =
make more=20
room and 8 ops on his hands.</FONT></DIV>
<DIV><FONT size=3D2>Ryan's fingers are pretty poor, he has 3
fingers and =
a thumb=20
on each hand and quite limited movement</FONT></DIV>
<DIV><FONT size=3D2>although its amazing what he can do and how
quickly =
one gets=20
use to them.</FONT></DIV>
<DIV><FONT size=3D2>Our main concern at present is his poor speech
=
articulation=20
and his lack of confidence in talking to those</FONT></DIV>
<DIV><FONT size=3D2>outside the family unit. Unfortunately speech
=
services are not=20
great in our area and I have considered going</FONT></DIV>
<DIV><FONT size=3D2>back to college myself. Any information or
advice =
gratefully=20
received about how you approach this in the states.</FONT></DIV>
<DIV><FONT size=3D2></FONT> </DIV>
<DIV><FONT size=3D2>Karen Stewart</FONT></DIV></BODY></HTML>
------=_NextPart_000_00BB_01BE1980.AD36A360--
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Date: Thu, 26 Nov 1998
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From: GSieb91515@AOL.COM
Subject: Re: Kelly Spadini has a new
baby brother!!!
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Congratulations Kelly and family--
We wish you all the best with your new edition to the family.
The Sieberts
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Date: Thu, 26 Nov 1998
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From: GSieb91515@AOL.COM
Subject: Re: Zoey's Surgery...A Success!!...I
think!
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Christina-
Glad to hear that Zoey did well with her surgery. But, was there
a special
reason why the surgeon didn't come out to talk to you? I would have
been
outraged if there wasn't an emergency situation to blame.
Brenda
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Date: Thu, 26 Nov 1998
21:48:24 EST
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To all our families:
Hoping everyone had a very happy and healthy thanksgiving. Tim
and
Carol--Thanks so much for the inspiring thanksgiving poems. They
really get
the message across.
Wishing everyone and their families a happy holiday.
The Sieberts
Houston
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Date: Thu, 26 Nov 1998
18:46:54 -0800
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From: "Brent E. Young"
<beyoung@IX.NETCOM.COM>
Subject: Re: Zoey's Surgery...A Success!!...I
think!
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Nodrmat26@AOL.COM wrote:
> Zoey's Mom here. Just wanted to let everyone know that Zoey
came
> through
> surgery just fine on Tuesday (24th). She was a little more
cranky
> this time
> than in the past. I guess because they released the rest of
her
> fingers on
> her right hand and she is most definately right handed! Poor
baby.
> The
> surgeon never came out to talk to me, so I won't know until Monday
how
> well it
> went. Anyway. Another surgery survived!!! Next
one will be on her
> little
> head in February 99. Bye everyone and have a very nice Thanksgiving.
> Christina
> San ANtonio
Hi Everyone,
I am glad to hear Zoey's surgery was a success. I hope to hear updates
on how she's doing very soon.
Kelly Spadini
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Date: Thu, 26 Nov 1998
22:07:34 -0500
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From: Richard Thornquist
<rlthorn@EARTHLINK.NET>
Subject: Re: Ears
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Hi Everyone!
Andrew had eartube surgery just about a week ago and they mentioned
that the
"t-tubes" they were putting in had a 1% chance of leaving a hole in
Andrew's
eardrum. Has anyone heard of this or had this happen to them?
They did say
that it would easily be corrected by surgery, but I'm not thrilled
about the
possibility of another surgery. Andrew will be having enough
in his life,
no need to add more to the list. But the benefits of the eartubes
outweighed the possibility of the hole afterwards. Has this happened
to
anyone else?
I also have a problem with ear plugs. I got some that molded to
the outside
of Andrew's ears, but they kept falling out. Plus, I need something
that is
quickly put in and stays automatically. Andrew does not like
people
touching his ears (which I can't blame him). Any suggestions?
My other problem is hats. I have found ones that fit, but Andrew
throws a
fit and does not like anything put on his head. Still to this
day, I have
to hold his head still for haircuts. It probably looks like it
will have to
be a coat with a hood, because hoods don't bother him. But if
anyone had
any suggestions on how to get Andrew over this fear, I would appreciate
it.
One more thing, and I will be done. When Andrew had his eartube
surgery
last Thursday, they finally gave him Versid. What a wonderful
drug. He was
much calmer going to the operating room. My husband had to take
him this
time, because they wouldn't let me in the operating room being pregnant
and
all. But he did say that Andrew did not get upset until they
tried to put
the mask on him. They have never offered it to us before this
and I don't
know why. Do they not give it to children under a certain age?
It kind of
makes me mad that they never offered it before, even seeing how upset
he
gets. We generally see the same nurses everytime. The other
great thing
that happened is that his ENT let Andrew go into the operating room
with his
pajamas on. It freaks Andrew out when things tie behind him.
(his costume,
and my maternity shirts) I truly love his doctors.
Well that is all for now, but I think that is enough. Talk to
everyone real
soon.
Thank you in advance.
Lynn Thornquist
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Date: Thu, 26 Nov 1998
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From: Richard Thornquist
<rlthorn@EARTHLINK.NET>
Subject: Re: Speech
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----
Our main concern at present is his poor speech articulation
and his =
lack of confidence in talking to those
outside the family unit. Unfortunately speech services
are not great =
in our area and I have considered going
back to college myself. Any information or advice
gratefully =
received about how you approach this in the states.
=20
Karen Stewart
=20
Karen,
=20
The one thing that has helped my son, Andrew, is
the fact they we =
try and incorporate some signs with the words. To be perfectly
honest =
with you, the people on the listserv were the ones who suggested this
to =
me. I don't per say use it fluently, but at his play group they
do (run =
by his ST and OT). I truly think that has helped alot, because
he can =
still communicate what he wants. Another suggestion is try cutting
=
pictures off of your food product boxes and such, then laminate them
and =
stick magnets on the back. This way you can stick them to your
fridge =
and your son can at least put pictures to words and will be able to
=
communicate with you. This will lessen the frustration and cause
him to =
start using more words.
=20
I hope this helps you. Feel free to e-mail
me personally.
=20
Lynn Thornquist
rlthorn@earthlink.net
------=_NextPart_000_0054_01BE198A.A94F99A0
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><!DOCTYPE HTML PUBLIC "-//W3C//DTD W3
=
HTML//EN">
<META content=3D'"MSHTML 4.72.3110.7"' name=3DGENERATOR>
</HEAD>
<BODY bgColor=3D#ffffff>
<DIV> </DIV>
<BLOCKQUOTE=20
style=3D"BORDER-LEFT: #000000 solid 2px; MARGIN-LEFT: 5px; PADDING-LEFT:
=
5px">
<DIV><FONT face=3DArial size=3D2><B>----</B></FONT></DIV>
<DIV><FONT size=3D2>Our main concern at present
is his poor speech=20
articulation and his lack of confidence in talking
to =
those</FONT></DIV>
<DIV><FONT size=3D2>outside the family unit.
Unfortunately speech =
services are=20
not great in our area and I have considered going</FONT></DIV>
<DIV><FONT size=3D2>back to college myself.
Any information or =
advice=20
gratefully received about how you approach this
in the =
states.</FONT></DIV>
<DIV><FONT size=3D2></FONT> </DIV>
<DIV><FONT size=3D2>Karen Stewart</FONT></DIV>
<DIV><FONT size=3D2></FONT> </DIV>
<DIV><FONT size=3D2>Karen,</FONT></DIV>
<DIV><FONT size=3D2></FONT> </DIV>
<DIV><FONT size=3D2>The one thing that has
helped my son, Andrew, is =
the fact=20
they we try and incorporate some signs with the
words. To be =
perfectly=20
honest with you, the people on the listserv were
the ones who =
suggested this=20
to me. I don't per say use it fluently,
but at his play group =
they do=20
(run by his ST and OT). I truly think
that has helped alot, =
because he=20
can still communicate what he wants. Another
suggestion is try =
cutting=20
pictures off of your food product boxes and such,
then laminate them =
and=20
stick magnets on the back. This way you
can stick them to your =
fridge=20
and your son can at least put pictures to words
and will be able to=20
communicate with you. This will lessen
the frustration and =
cause him=20
to start using more words.</FONT></DIV>
<DIV><FONT size=3D2></FONT> </DIV>
<DIV><FONT size=3D2>I hope this helps you.
Feel free to e-mail =
me=20
personally.</FONT></DIV>
<DIV><FONT size=3D2></FONT> </DIV>
<DIV><FONT size=3D2>Lynn Thornquist</FONT></DIV>
<DIV><FONT =
size=3D2>rlthorn@earthlink.net</FONT></DIV></BLOCKQUOTE></BODY></HTML>
------=_NextPart_000_0054_01BE198A.A94F99A0--
=========================================================================
Date: Fri, 27 Nov 1998
08:45:57 EST
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From: TFinch10@AOL.COM
Subject: Re: APERT Digest - 25 Nov 1998
to 26 Nov 1998 (#1998-109)
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Content-transfer-encoding: 7bit
Hi Karen and Steve,
Where do you live? Speech services vary in the states, and certainly
outside
the US. Our son Nate is 8 years old. His articulation improves yearly.
(Although he just got set back with a palate widener device) but he
has had to
WORK...Best, Jeanne in Boston
=========================================================================
Date: Fri, 27 Nov 1998
10:59:16 -0500
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From: baconsmith <bluenose@TELUSPLANET.NET>
Subject: Re: Zoey's Surgery, Kelly's
new babe
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Hi Christina, Pat here, I keep thinking of Zoey and the frustration
she
must have not being able to use that right hand. I hope
she is feeling
really good soon and doesn't have too much pain. Hope you have
a good
holiday there and that the surgeon has a successful report for you.
I'd be
antsy until I heard from him. I have to agree with (was it Jenn?)
that I'd
be after the surgeon for a report.
Congratulations to Kelly on being a big sister.
Well take good care.
Pat in Calgary (EvaJessie's mom)
email to: bluenose@telusplanet.net
IM: onlypeach
www.widesmiles.org/gallery/peach/
One cannot kill time without injuring eternity. HD Thoreau
Civil Disobedience
=========================================================================
Date: Sat, 28 Nov 1998
16:34:37 -0500
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From: Alice Lynch <goddess@CAPITAL.NET>
Subject: Re: Ears
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Hi Lynn!
Colin doesn't like hats much either and it get's better with age.
He'll
wear hats now and gloves. He still won't wear anything with long
sleeves.
I think it all goes back to the operations on his head and hands.
Casts to
the shoulders, etc. Every winter we have the same discussions
about how
the weather is cold and he needs to wear his winter coats. We
used to use
cotton balls with a film of vasiline over it to wash hair. He's
nine now
and is just starting to put his head underwater for swimming.
The tubes
have been out for years now. Just keep trying anything and everything
and
eventually something will click.
Good luck.
Alice from Lake George
----------
> From: Richard Thornquist <rlthorn@EARTHLINK.NET>
> To: APERT@LISTSERV.AOL.COM
> Subject: Re: Ears
> Date: Thursday, November 26, 1998 10:07 PM
>
> Hi Everyone!
>
> Andrew had eartube surgery just about a week ago and they mentioned
that
the
> "t-tubes" they were putting in had a 1% chance of leaving a hole
in
Andrew's
> eardrum. Has anyone heard of this or had this happen to them?
They did
say
> that it would easily be corrected by surgery, but I'm not thrilled
about
the
> possibility of another surgery. Andrew will be having enough
in his
life,
> no need to add more to the list. But the benefits of the eartubes
> outweighed the possibility of the hole afterwards. Has this
happened to
> anyone else?
>
> I also have a problem with ear plugs. I got some that molded
to the
outside
> of Andrew's ears, but they kept falling out. Plus, I need something
that
is
> quickly put in and stays automatically. Andrew does not like
people
> touching his ears (which I can't blame him). Any suggestions?
>
> My other problem is hats. I have found ones that fit, but Andrew
throws
a
> fit and does not like anything put on his head. Still to this
day, I
have
> to hold his head still for haircuts. It probably looks like
it will have
to
> be a coat with a hood, because hoods don't bother him. But
if anyone had
> any suggestions on how to get Andrew over this fear, I would appreciate
it.
>
> One more thing, and I will be done. When Andrew had his eartube
surgery
> last Thursday, they finally gave him Versid. What a wonderful
drug. He
was
> much calmer going to the operating room. My husband had to
take him this
> time, because they wouldn't let me in the operating room being pregnant
and
> all. But he did say that Andrew did not get upset until they
tried to
put
> the mask on him. They have never offered it to us before this
and I
don't
> know why. Do they not give it to children under a certain age?
It kind
of
> makes me mad that they never offered it before, even seeing how upset
he
> gets. We generally see the same nurses everytime. The
other great thing
> that happened is that his ENT let Andrew go into the operating room
with
his
> pajamas on. It freaks Andrew out when things tie behind him.
(his
costume,
> and my maternity shirts) I truly love his doctors.
>
> Well that is all for now, but I think that is enough. Talk
to everyone
real
> soon.
>
> Thank you in advance.
>
> Lynn Thornquist
=========================================================================
Date: Fri, 27 Nov 1998
15:38:44 -0500
Reply-To: Information exchange and Internet
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From: ROBIN L HILL
<CARMENRAE@PRODIGY.NET>
Subject: Re: Zoey's Surgery...A Success!!...I
think!
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
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Glad to hear Zoey is doing ok after her surgery. Which fingers
did she
have released this time? I am just curious of the different approaches
because our hand surgeon says he never performs surgery on two sides
of a
finger at one time. Something to do with each finger having two
arteries
supplying blood flow and if you were to damage both arteries (rare,
but.....) then you would lose use of the finger. Anyway, we noticed
alot
of the doctors do release more than one at a time and it appears that
they
are doing surgery on both sides of the finger. We are just trying
to find
out if this is common among other doctors or maybe ours has a different
opinion (VERY conservative??????) Any input would be appreciated.
Has
anyone else ever heard this opinion from their hand surgeons???
Hope
everyone had a great Thanksgiving! Believe it or not, we are
doing
Thanksgiving number 2 today. We went to relatives yesterday who
prepare a
traditionally SOUTHERN Thanksgiving; so we are doing our more Mid-Western
style today at home! BOY, we're gonna be STUFFED!!!!!!!
Robin Hill
----------
> From: Nodrmat26@AOL.COM
> To: APERT@LISTSERV.AOL.COM
> Subject: Zoey's Surgery...A Success!!...I think!
> Date: Thursday, November 26, 1998 10:16 AM
>
> Zoey's Mom here. Just wanted to let everyone know that Zoey
came through
> surgery just fine on Tuesday (24th). She was a little more
cranky this
time
> than in the past. I guess because they released the rest of
her fingers
on
> her right hand and she is most definately right handed! Poor
baby. The
> surgeon never came out to talk to me, so I won't know until Monday
how
well it
> went. Anyway. Another surgery survived!!! Next
one will be on her
little
> head in February 99. Bye everyone and have a very nice Thanksgiving.
> Christina
> San ANtonio
=========================================================================
Date: Fri, 27 Nov 1998
15:54:42 -0500
Reply-To: Information exchange and Internet
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and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
From: ROBIN L HILL
<CARMENRAE@PRODIGY.NET>
Subject: Re: Kelly Spadini has a new
baby brother!!!
MIME-Version: 1.0
Content-Type: text/plain; charset=ISO-8859-1
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Congratulations on becoming a big sister again! I know you are
very
excited!!!
----------
> From: Brent E. Young <beyoung@IX.NETCOM.COM>
> To: APERT@LISTSERV.AOL.COM
> Subject: Kelly Spadini has a new baby brother!!!
> Date: Wednesday, November 25, 1998 10:16 PM
>
> Hi from Kelly!
>
> I have some great news to share with all of you. My baby brother
was
> born last night at
> 12:41 AM. He weighed 8 lb. and 6 oz. He was 21 inches in length.
I went
> and saw him in the hospital today and he is a sweetie. I can't wait
to
> see him again. He's not even 24 hours and already I love him so much.
> You can definitely say I am a very proud big sister(for the 2nd time).
>
> Bye,
> Kelly
=========================================================================
Date: Fri, 27 Nov 1998
16:08:26 EST
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From: BBarn60368@AOL.COM
Subject: Re: Zoey's Surgery...A Success!!...I
think!
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
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Robin:
Our Dr. here in Orlando has the same opinion. He never operated
on two
different sides of the same finger through out Shirley's finger releases.
Alice in Orlando
=========================================================================
Date: Fri, 27 Nov 1998
16:58:35 EST
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From: Nodrmat26@AOL.COM
Subject: Re: Zoey's Surgery...A Success!!...I
think!
Mime-Version: 1.0
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In a message dated 11/26/98 8:43:37 PM Central Standard Time,
GSieb91515@AOL.COM writes:
<< But, was there a special
reason why the surgeon didn't come out to talk to you? I would
have been
outraged if there wasn't an emergency situation to blame. >>
Zoey's Mom here. I had an appt with Zoey's plastic surgeon right at
the time
that she was getting out of surgery. The surgeon came in briefly
and I guess
because I wasn't there and my mother was, he just told her that Zoey
did fine
and was all done. The nurses said that he was supposed to return,
but when it
became late, I was so anxious to leave, that I didn't care.
I just wanted to
leave. We're supposed to see him this Monday and I'll find out
then how
wonderful her hand looks.
Christina
S.A.
=========================================================================
Date: Fri, 27 Nov 1998
17:12:56 EST
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From: Nodrmat26@AOL.COM
Subject: Zoey...Update
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
Content-transfer-encoding: 7bit
Zoey's Mom here. I know I should've hunted the surgeon down and
I would have
if I would've had to wait longer than Monday to see him. And,
I trust him
completely to have told me if the sugery hadn't turned out the way
he had
planned it to. All they did this surgery was to split her middle
two fingers
in half and graft some skin in between. Come to think of it,
they've never
done two sides of one finger at the same time. They separated
her two pinkies
first, then worked on the middle "part".
She's doing real well. A little peeved that we took away her
right hand
(she's right-handed), but dealing with it OK, I supppose. She's
still trying
to smack me with her splint (we usually get a cast) when I don't move
quick
enough and I'm learning to dodge rather quickly now. She's also
learned how
to cover her trach with her chin and emit sounds that let me know she
needs
something (mostly attention!) It's really cute. Any other
trach children do
this and at what age? It's no longer possible to ignore my babies
demands for
candy at the grocery store, she screams rather loudly!!!
Bye now
Christina
S.A.
=========================================================================
Date: Fri, 27 Nov 1998
17:30:38 -0500
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From: baconsmith <bluenose@TELUSPLANET.NET>
Subject: Re: Zoey...Update
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Hi Christina. WE've had that sort of situation too with missing
hte surgeon
because he's off to another procedure and we didn't happen to be there
at
the right time. But sometimes, all you wanna do is get home and
get the
kiddos settled in their own space. And you can get the details
later. Zoey
knows what those casts are for! EvaJessie has had to wear arm
restraints so
that she couldn't put her hands in her mouth following her facial /
palate
surgery, so I remember the days!
My friend's little fellow who is just two also has a trach (Pierre Robin
Sequence/Syndrome) and he makes little noises, too. It is cute!
And they
do know how to turn it on when they want something!
Hope you are having mild weather there. We have no snow here and
it's
nearly December.
Pat in Calgary
email to: bluenose@telusplanet.net
IM: onlypeach
www.widesmiles.org/gallery/peach/
One cannot kill time without injuring eternity. HD Thoreau
Civil Disobedience
=========================================================================
Date: Fri, 27 Nov 1998
18:55:15 -0800
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From: Claudia Salazar
<pcbaas@HOME.COM>
Organization: @Home Network
Subject: Re: Ears
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Hi Lynn,
Allie has so many ear tubes placed I cant even count them. She
has
never had her ear perforated. I believe the anesthesiologist
is the one
who orders the pre-op meds and it may have been a different one this
time for you. Allies dr suggested silly putty for ear molds,
have used
it for 8 years with no problems.... one of the other moms said it can
cause problems if it is hot weather.... We have never had that problem.
I guess it depends on your climate. We only use them for bath
time and
swimming. Hope this helps...I dont really have any suggestions
for the
hats except to let him be a part in picking it out and putting it on
himself? Good Luck
Claudia Salazar
Richard Thornquist wrote:
>
> Hi Everyone!
>
> Andrew had eartube surgery just about a week ago and they mentioned
that the
> "t-tubes" they were putting in had a 1% chance of leaving a hole
in Andrew's
> eardrum. Has anyone heard of this or had this happen to them?
They did say
> that it would easily be corrected by surgery, but I'm not thrilled
about the
> possibility of another surgery. Andrew will be having enough
in his life,
> no need to add more to the list. But the benefits of the eartubes
> outweighed the possibility of the hole afterwards. Has this
happened to
> anyone else?
>
> I also have a problem with ear plugs. I got some that molded
to the outside
> of Andrew's ears, but they kept falling out. Plus, I need something
that is
> quickly put in and stays automatically. Andrew does not like
people
> touching his ears (which I can't blame him). Any suggestions?
>
> My other problem is hats. I have found ones that fit, but Andrew
throws a
> fit and does not like anything put on his head. Still to this
day, I have
> to hold his head still for haircuts. It probably looks like
it will have to
> be a coat with a hood, because hoods don't bother him. But
if anyone had
> any suggestions on how to get Andrew over this fear, I would appreciate
it.
>
> One more thing, and I will be done. When Andrew had his eartube
surgery
> last Thursday, they finally gave him Versid. What a wonderful
drug. He was
> much calmer going to the operating room. My husband had to
take him this
> time, because they wouldn't let me in the operating room being pregnant
and
> all. But he did say that Andrew did not get upset until they
tried to put
> the mask on him. They have never offered it to us before this
and I don't
> know why. Do they not give it to children under a certain age?
It kind of
> makes me mad that they never offered it before, even seeing how upset
he
> gets. We generally see the same nurses everytime. The
other great thing
> that happened is that his ENT let Andrew go into the operating room
with his
> pajamas on. It freaks Andrew out when things tie behind him.
(his costume,
> and my maternity shirts) I truly love his doctors.
>
> Well that is all for now, but I think that is enough. Talk
to everyone real
> soon.
>
> Thank you in advance.
>
> Lynn Thornquist
=========================================================================
Date: Fri, 27 Nov 1998
19:23:31 -0800
Reply-To: Information exchange and Internet
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Sender: Information exchange and
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From: Claudia Salazar
<pcbaas@HOME.COM>
Organization: @Home Network
Subject: Re: Zoey...Update
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
Content-Transfer-Encoding: 7bit
Hi Christina and Zoey,
Glad to hear Zoey's spirits are good. Now we all understand why
you
didnt get a chance to speak with the surgeon right after. I know
even
when Allie has had minor surgeries, it is comforting to just hear the
Dr
say everything went well. We just soak up every word they have
to tell
us.
My daughter Allie has a trach also, and uses a Passe-Muir to help her
verbalize. She used to use her chin to cover her trach also.
Cant
remember exactly at what age. Her funniest trick was when we
changed
her trach, she would put her chin over the hole and make a noise that
sounded like pooting. Having two older brothers, she was the
big hit
with this trick. They would go on and on about it. She
is eight now,
and uses the Passe Muir all the time (waking hours) I didnt get
to hear
her voice or cries until she was around 10mos old. The first
time they
put the Passe-Muir on, she started crying, everyone in the room was
teary eyed. It was funny because people were passing by and probably
wondering why are all these people so happy to see a baby crying.
If
you need info on it, let me know. Its also good as they get older,
so
nothing else gets inside.
For speech, Allie also learned signs, it became frustrating not being
able to verbalize what she needed. She even made up her own signs,
you
can use whatever helps your child communicate.
Also congratulations to Kelly and her new baby brother!
Wishing everyone a healthy holiday season!
Claudia and Allie Salazar
San Diego
Nodrmat26@AOL.COM wrote:
>
> Zoey's Mom here. I know I should've hunted the surgeon down
and I would have
> if I would've had to wait longer than Monday to see him. And,
I trust him
> completely to have told me if the sugery hadn't turned out the way
he had
> planned it to. All they did this surgery was to split her middle
two fingers
> in half and graft some skin in between. Come to think of it,
they've never
> done two sides of one finger at the same time. They separated
her two pinkies
> first, then worked on the middle "part".
> She's doing real well. A little peeved that we took away her
right hand
> (she's right-handed), but dealing with it OK, I supppose. She's
still trying
> to smack me with her splint (we usually get a cast) when I don't
move quick
> enough and I'm learning to dodge rather quickly now. She's
also learned how
> to cover her trach with her chin and emit sounds that let me know
she needs
> something (mostly attention!) It's really cute. Any other
trach children do
> this and at what age? It's no longer possible to ignore my
babies demands for
> candy at the grocery store, she screams rather loudly!!!
> Bye now
> Christina
> S.A.
=========================================================================
Date: Fri, 27 Nov 1998
22:44:30 -0500
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From: foster <foster@ICONTECH.COM>
Subject: Various
Mime-Version: 1.0
Content-Type: text/plain; charset="us-ascii"
Hope today finds everyone in the best of spirits and everyone is recovering
from any and all surgeries.
I took Billy for a checkup with the eye doctor who has been checking
his
eyes since he was born premature. His eyes are pretty healthy but,
the
doctor said he has Browns Syndrome. He explained that it is not anything
to
worry about since he can focus ok and that we will keep a close watch
on it.
We had noticed that his eyes would stray off to the side or down .
This is
something we will follow up on with his doctors in Hershey in the near
future. I have read on the internet about this condition and I was
wondering
if anyone else has any input or if anyone else has been told that their
child has this syndrome? I also asked the doctor about checking his
eye
pressure and both eyes read 13 which he said is good. I would not have
asked
about the pressue had I not read from one of you out there that this
could
be a problem.
Billy will also be starting speech therapy this Tuesday. He will be
21
months on the 4th and he can sign a few things but,he only can say
about ten
words. His evaluation for speech put him only at 11-13 months for verbal
skills and his understanding what is being said to him was 24-28 months.
So,
they will be working with him once a week. I also liked what
Lynn said
about the pictures on the fridge.
I also wanted to add that I just went last week to Foot Locker and was
able
to get Billy a new pair of Nike uptempo's which are perfect for
his wide
feet. They also have a long tongue that make them open pretty far down
and
you can fit the foot in very easily. I was also able to get him a pair
of
Timberland boots that fit good. The boots were a little expensive at
45
dollars but the sneakers were only 26 dollars.
Karen (PA)
=========================================================================
Date: Sat, 28 Nov 1998
00:48:51 EST
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: Debbie Dexter
<Debdex1@AOL.COM>
Subject: Remove
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Please remove me from your list. Its been a great help to me and my
friend.
Good Luck to you all.
=========================================================================
Date: Sun, 29 Nov 1998
12:50:14 +1300
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: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Fingers ops (was Zoey's Surgery)
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Hi Robin
>because our hand surgeon says he never performs surgery on two sides
of a
>finger at one time. Something to do with each finger having
two arteries
>supplying blood flow and if you were to damage both arteries (rare,
>but.....) then you would lose use of the finger. Anyway, we
noticed alot
>of the doctors do release more than one at a time and it appears that
they
>are doing surgery on both sides of the finger.
From my recollection, Amy's Surgeon doesn't do both sides of a finger at the same time because it puts too much stress on the stitches and the "original" skin on the finger.
Cheers
Ann
NZ
=========================================================================
Date: Sat, 28 Nov 1998
14:10:37 -1000
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: "Joana H. Magno,
M.D." <magnomd@ALOHA.NET>
Subject: Re: Fingers ops
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Although many of the hand surgeries involve surgery on more than
one
finger at a time, and often both hands, the reason that
both sides of
the finger are not worked on at the same time has to do with the blood
supply, and the need to supply blood to either stretched skin
or skin
grafts.
Mar had two sets of surgeries on her hands, and in fact,
the surgeons
worked on both hands and one foot each time. Had to have one
foot free
so that they had at least one limb for good IV access!
Joana
Howard & Ann wrote:
>
> Hi Robin
> >because our hand surgeon says he never performs surgery on two sides
of a
> >finger at one time. Something to do with each finger having
two arteries
> >supplying blood flow and if you were to damage both arteries (rare,
> >but.....) then you would lose use of the finger. Anyway, we
noticed alot
> >of the doctors do release more than one at a time and it appears
that they
> >are doing surgery on both sides of the finger.
>
> >From my recollection, Amy's Surgeon doesn't do both sides of a finger
at the same time because it puts too much stress on the stitches and the
"original" skin on the finger.
>
> Cheers
> Ann
> NZ
=========================================================================
Date: Sat, 28 Nov 1998
22:45:34 EST
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: Yonstein@AOL.COM
Subject: Re: Fw: Hand Surgery and
other things
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Hello All:
Hope everyone had a happy, healthy Thanksgiving. It's been a while
since I
have had an opportunity to read my mail. Emily has been giving
me a run for
the money since her hand surgery November 4th. First it was the
stomach
virus, then the double ear infection, then she managed to take her
cast off,
then the bandages off. Just this past week, she had a fever of
102 for two
days and now has finally gotten that out of her system and seems to
be doing
ok.
I want to welcome the new families to the list. We are the Krebs;
Brian,
Janine, Nicholas and Emily (16 months). Emily had had 4 surgeries
so far and
is doing very well. I know that you will find this a wonderful
family as we
have.
As far as the ears and tubes, Emily has had tubes since she was 6 months
old,
not so much for infections but for fluid build-up. We had her
hearing tested
and it was poor. The day she had the tubes inserted, the difference
was
amazing. She responded so much better. We, too, have used
vaseline and
cotton balls. I do, however, want to thank Claudia for the silly
putty tip.
I will try that for her bath tomorrow.
Hope Ashleigh had her surgery and is doing well. Emily had her
tear ducts
probed at the same time as her palate surgery in May. It seems
to have made
an improvement in her eyes. They hardly tear at all, although
her eye doctor
said it may need to be repeated again.
Glad to hear that Jonathan and Zoey are recovering nicely for their surgeries.
HAPPY BELATED BIRTHDAY to NICHOLAS GRAVES Nov. 26th. Hope you
enjoyed your
special day.
Hope all is well with everyone else.
Best wishes,
Janine Krebs
New York