Hi All,
Years ago, I met a family who had four boys and lived in Florida. The
youngest
two boys were identical twins born with Apert syndrome. The twins would
be
about 12 or 13 years old now. I've forgotten the family's name. Anyone
out
there know them? Thanks! Jeanne
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Date: Mon, 8 Feb 1999
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From: ROBIN L HILL
<CARMENRAE@PRODIGY.NET>
Subject: Re: Carmen Rae and Asher
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No, Carmen Rae and Asher are not twins. Carmen Rae belongs to
Mike and
Robin Hill in Newnan, Georgia. Carmen Rae was born January 18,
1998 and
was having her second hand surgery. Asher is the daughter of
Doug and
Ondra Lee. They live in Griffin, Georgia which is about an hour
from us.
Asher was born on October 5, 1998 and was having her cranial surgery.
We
were lucky (as lucky as you get when your children are having surgery)
that
both were having surgery on the same day, same time, DIFFERENT DOCTORS
(HAHA) so we could sit and wait together. My husband said Carmen
Rae's
nurse told him that Carmen Rae and Asher were the "talk" of the morning
meeting at Egleston Children's Hospital the day after their surgeries.
It
seems it was VERY rare to have two children with Apert Syndrome in
a
hospital at the same time. I think it was a first for this hospital.
Anyway, I know this was a long explanation but I hope it clears things
up a
bit. Take care and keep the two precious girls (not twins) in
your
thoughts and prayers.
Robin Hill
----------
> From: Lisa Guyette <LAM1126@AOL.COM>
> To: APERT@LISTSERV.AOL.COM
> Subject: Re: Carmen Rae and Asher
> Date: Sunday, February 07, 1999 11:54 PM
>
> Are Carmen Rae and Asher twins? If so I never even thought
that there
could
> be twins with Aperts. If so that must be so hard to juggle
the
surgeries.
> Wow!
>
> Lisa Guyette
> Mother of Samantha 3 months
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From: Liz Saylan <LSaylan@AOL.COM>
Subject: Re: Carmen Rae and Asher
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glad to hear the sugeries went well please let me know the next time
u are in
town so that i can come down and meet u. please feel free to either
call me or
email me robin! Take care everyone hope all is well. I have been working
at a
new publix so i have been very busy since we just opened 5 days ago.
Will try
to keep better in touch with everyone!
Liz Saylan
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From: Timothy Holt
<tholt@WEBTV.NET>
Subject: Apert Show
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Hello everyone! I just spoke with the traffic control manager
for PBS.
He said this show might be taken off the air. In North Carolina
it will
be aired on April 1st. This is not a joke! he he! The time
it will air
is 1:30. If you would like a # to call and check your area call
(919)549-7072. The show may not make it until April.
Hope this is helpful to anyone interested!
Tim & Mechelle Holt address:tholt@webtv.net
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From: Timothy Holt
<tholt@WEBTV.NET>
Subject: calcium build up
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Has anyone had a problem with calcium build up? Courtney has a
little"growth" behind her left ear. Her dermatologist looked
at it last
week, and said it needed to be shaved. They will numb the area
to do
the proceedure. He said this will be nothing compared to what
she has
been through..... easy for him to say! She is not his baby! I
hate to
even taking her for her shots! They will shave it on Feb 15th.
He said
her ear would be sore for several weeks.
Speaking of shots~~~
Anyone getting the RSV shots.....Does the
nurse(s) usualy stick the
needle halfway through the depth of the leg. This upsets me....I
just
wanted to know if this was proceedure or if we had an uncaring nurse.
I
know it has to be injected into the muscle, but halfway through her
leg?
During our Developmental Evaluation last week, I was told she has really
came up in her skills and mobility. They recommended lots of
floor time
to help Courtney learn to crawl, and sit up. She is really trying
hard!
They were pleased with her progress.
Thanks for listening. Glad to hear all the surgeries went well!
TAKE CARE, Mechelle
Tim & Mechelle Holt address:tholt@webtv.net
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From: Rich Thornquist
<rlthorn@EARTHLINK.NET>
Subject: Second child question...
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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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From: BBarn60368@AOL.COM
Subject: Re: Twins with Apert
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Jeanne:
Sandy Deakins told me of a family, here in Florida, with twin Apert
boys,
about 5 years ago. Sandy has a daughter, Casey, who is 11 or
12 with Apert.
Sandy or Tony, are ya'll out there. Did you ever meet that family?
(The
Deakins are on the listserv.)
Alice in Orlando, Florida
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Lynn:
Shirley has been going to the Dentist since she was 1 year old and it
doesn't
seem to get much easier. She is 5 now. She pretty much
screams bloody murder
through the whole procedure. We also have a wonderful and humorous
Dentist
who really is good with her, but she just doesn't give him much of
a chance.
Last time we were there Shirley spit the cleaning "stuff" all in his
face. It
was so embarrassing. I felt terrible. So, anyway, if Andrew
acts up don't
feel like you are alone.
I think these poor children go through so much, at such a young age,
that they
don't trust any stranger who comes at them. Experience has pretty
much
trained them that this usually means that they are going to get hurt
somewhere.
Alice in Orlando, Florida
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From: Chad & Denise
Graham <cgraham@INFOAVE.NET>
Subject: DENTIST
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LYNN,
Daryl is almost 3 and we
are just now getting haircuts without
screaming. We give him suckers and let him sit in my lap while
they cut
his hair. I also let them leave off the drape. It scares
him and I
prepare to change his and my clothes afterwards. This has seemed
to work
and we are doing well now.
As for the dentist, DAryl
is still scared, but is familiar with our
dentist. I always take him when his sister or I go. He
has a lot of
personality and tries to get Daryl used to him. Daryl is reluctant
to open
his mouth, but he opens it a little without screaming. Maybe
you can take
a sucker and have him open his mouth and let you rub round and round
on his
tounge with his mouth wide open. This seems to work for us.
We kind of
make it a game. I only expect him to keep his mouth open for
about 15
seconds each time. (make sure you use the sugerless suckers)
the dentist
would like that better!ha..ha..
Hope this helps!
Denise Graham
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Comments: Authenticated sender is <jgibson2@POP.erols.com>
From: jgibson2@EROLS.COM
Subject: Re: Second child question...
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> 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?
You can only do so much to prepare your first for
no longer being
an only. IMHO it's more important for you to prepare yourself
for
his reaction (not pretty, most likely). He'll adjust though,
nearly
all do. My oldest thought his brother was wonderful for about
2
weeks (he was just 2), then apparently realized that the invader
wasn't temporary. I just tried to give him as much attention
as I
could. If he's a daddy's boy, that's probably even easier for
dads
than for moms. I felt like you about my older son holding
the new
baby -- I didn't need to worry, my second weighed 10 lbs at birth and
the first couldn't have lifted him if he'd wanted. Just be sure
you
take one or the other of them to the bathroom with you if you're
alone in the house.
> 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.
Get a copy of Mercer Mayer's book about going to the dentist.
It
should be available at your local bookstore if your library doesn't
have it. It's really cute and boys especially like that part
about
being asked to spit.
Call the dentist in advance to see how HE prefers to handle scared
kids. My dentist likes to have kids come to the office
with their
parents for the parents checkup prior to examining the kid. All
my
boys got to ride up and down in the chair and look at all the
equipment several times before it was their turn. My dentist
was
also willing allow Matthew to sit on MY lap if necessary during
the
exam. Matthew has always been really terrified of strangers,
even
though he's never had any serious illnesses, so we were concerned
that there might be a problem. There wasn't though.
We did the same thing at the barber shop too. BTW, barbers are
much faster than hairdressers (generally under 5 minutes) and
used
to moving targets so you might look for an old fashioned barber shop
for his haircuts. I pay $4 for Matthew's haircuts, so it's even
cheaper.
Judy Gibson
jgibson2@erols.com
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From: Mary Bresnahan
<Munch35738@AOL.COM>
Subject: Re: Research
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Hello, sorry I have not written lately. I have been busy and finishing
up my
research paper on Apert syndrome. Thanks and I will post the
finished
product. Mary
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From: Rich Thornquist
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Subject: Thank you!!!
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Hello everyone,
I just wanted to thank the people who responded tonight about my
questions. As far as the hairdresser, Denise, we did the same
thing the
last time at the hairdresser. For the first time they offered
Andrew a
lollipop, but he has never had the drop cloth around him and he has
also
always sat in my lap. Except this last time, I didn't have to
hold his
head still. He did move a little bit but not as much. Maybe
the
hairdresser was better this time. I take him to a place called
Snip
Its. They are wonderful, but I will soon be going to another
place
(started by one of Snip Its employees) and she has VCR's at every
chair. Looks like we will be bringing Barney next time.
The dentist we will be going to is just a child's dentist and he does
let you hold your child, but of course I wouldn't have it any other
way. Neither would Andrew. But the idea about letting Andrew
play with
things before we do the teeth is a good idea. The only thing
with
Andrew is, as soon as I go to sit in the chair with him, he starts
screaming right then. At the Opthomologist he wouldn't sit still
and
just kept screaming. You'd think we were seeing the ENT!!!!
Thank you again for all the responses I have received.
Lynn
rlthorn@earthlink.net
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: Twins with Apert
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We know of two sets of twins with Apert born in Australia. Sadly one of the younger twins died last year.
Ann
NZ
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Balance
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A recent search identified a Swedish paper that specifically mentions poor balance as being a characteristic of Apert Syndrome. It certainly is with Amy but I cannot recall anyone else mentioning it.
Anyone else have experience with their children with Apert syndrome having poor balance?
Ann
NZ
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Subject: Re: Balance
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Ann,
I am not sure what you mean by "poor balance", but Andrew tends to be
a little stumbly. But he rarely looks where he is going. I
think alot of it is attributed to his eye muscle problem, which will be
fixed sometime when he is 7 years old. After his facial surgeries
are complete. When Andrew looks up, his left eye tends to go outward,
so he compensates by looking up alot. He cannot move both eyes to
look up. His Opthomologist is going to wait and do muscle surgery
until his Craniofacial surgeon is finished (sorry repeating myself).
Can you be a little more specific with the "poor balance".
Lynn
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From: Robyn Johnston
<robyn@ORDATA.COM>
Subject: Re: Second child question...
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Hi Lynn,
We purchased a Bearnstien Bear's book called 'New Baby'. It is
a cute book
that toddlers can appreciate about a new baby coming. We probably
read it
almost everyday. :- ) I just kept repeating that there
was a baby in
mommies tummy. We also got a little baby doll for Brenna to carry
out of
the hospital. It wasn't a bit hit at the time, but now she pretends
she is
a 'mommy' all the time. I think the most important thing is to
keep giving
both children some one on one quality time when you can.
Congrats and good luck!
Robyn J
p.s. our dentist also let us 'play' a couple of times before working
on her
mouth.
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: soft sopts and hand surgery
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> Carmen Rae is going in on Friday (2/5/99) to release pinkies on both
hands
>and to possibly deepen web space on thumbs. Anyone else experience
the web
>space between thumb and index "creeping" up?
>Robin Hill
>
>
Amy had her annual cranial cacial team appointment today. One of the
plastic surgeons carefully checked her web spaces and "tut tutted" to himself.
Didn't say anything to us. They certainly have crept up though.
Amy will have a distraction operation later this year and possibly a facial bipartition as well. The team have now done 5 distractions so at least they have had some practice. One of them has done others in Canada. No one in New Zealand has done a bi partion before so an experienced English surgeon now living in Australia will come over and do it.
It is great to live in a country where these things are free. We pay
for it in taxes though. 33% in the dollar (19% up to about US$15 000 income)for
national tax but there are no states to want tax as well. We also have
12.5% goods and services tax on just about everything.
Is that a lot?
Amy will also have a skin thingummy (Ann knows what it's called) removed from the back of her head in a separate day surgery operation. So it will be a big year for surgery for us.
I hope Carmen Rae and Asher Lee have come through with flying colours.
Bye , Howard
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From: Jenngram@AOL.COM
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Jordan also doesn't look where he is going....walks into things all
the time,
and he has absolultely no eye problems at all. I personally think its
a case
of his brain working faster than his little legs can move him. He doesn't
really stumble, but is always looking down at somemething..
Jenn(Tampa/St. Pete)
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From: "Horning, Bob
D (MN14)" <Horning_Bob@HTC.HONEYWELL.COM>
Subject: Re: Balance
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Ann
Krista has never had great balance. Undoubtedly this is partly
because of
her feet and crooked ankles. How much, if any, is due to other
problems we
don't know. She stumbles/falls much easier than the other
kids and has
more trouble on rough terrain. But she doesn't seem unstable
when sitting
or standing on a regular surface. It seems to me to be more related
to her
feet than anything. She also has a greater than normal
fear of falling
since she can't catch herself very well (her shoulders and elbows are
fused).
We've seen great progress from having her in physical activities that
work
on her balance. Each winter she and I go downhill skiing once
a week
through a local disability program. As of a couple years ago
she had gotten
weaned from all the adaptive equipment and is skiing totally on her
own.
She's doing even better this year. She's far from being a champion
racer,
but I'm sure proud of her. The first year (6 years ago at age
5) we saw a
HUGE improvement in her balance and strength. Since then the
improvement
has been less dramatic, but still noticeable. This year I'm again
noticing
a bigger change. But I think that is because we've had her excercising
in a
pool a couple times a week, and it shows up as an improvement in her
skiing.
Bob Horning
> From: Howard & Ann <howrdnan@IHUG.CO.NZ>
> Subject: Balance
>
> A recent search identified a Swedish paper that specifically mentions
poor
> balance as being a characteristic of Apert Syndrome. It certainly
is with
> Amy but I cannot recall anyone else mentioning it.
>
> Anyone else have experience with their children with Apert syndrome
having
> poor balance?
>
> Ann
> NZ
>
>
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From: Judy Amerman
<jamerman@UTI.COM>
Subject: Re: balance
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A little more input on balance. Nick's orthopedic doctor took
e-rays of
Nick's hips when we seen him. It seems that in alot of apert kids that
the
bones does not sit on the joints as they should. I forget his
exact words
but there is joint problems sometimes.
this can also apply to the arm sockets as well if I remember right.
Nick walks with his feet pointed out, corrective shoes will not
fix this
problem since it also applys to the way the bones fit in the joints.
Hope this helps,
I know this is rather vague but it has been quite some time since I
was
told this info and it is not as fresh as it use to be.
Talk to your orthopedic surgeons for more info on your children.
As with
anything else, this may or maynot apply to your situation.
Judy
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From: Rich Thornquist
<rlthorn@EARTHLINK.NET>
Subject: Re: balance
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We have only taken Andrew to see an Orthopedist once and that was for
his
feet. The doctor said that there wasn't really a problem with
hips or feet at
the time (Andrew's feet are not that bad). Do you all think that
we should be
seeing him every year for a check up? I do see Dr. Upton at least
2 or 3
times a year and he has always taken a great interest in both Andrew's
feet
and hands. I don't believe we have ever had x-rays of Andrew's
hips done
either. Because his feet point out somewhat, but so does my right
foot and I
don't have any problems with balance or hips. I'm soooooo confused!!!!
How
many more doctors do we need? I do know that they will not be
doing Andrew's
feet (seperating toes) because one of the bones shares two toes.
Unfortunately, that is the only problem. Dr. Upton will be going
in and
making wedges between each toe (of tissue) to cure the ingrown toenail
problem. Andrew's toenails seem to be curving outward, has this
happened to
any of you?
I guess it is becoming question time for Lynn. I have been quiet
for so long,
but watch out now, I'm on a role.
Well, I better get going, Andrew is insisting I go make lunch.
Talk to you
later.
Lynn
rlthorn@earthlink.net
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Date: Tue, 9 Feb 1999
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From: BBarn60368@AOL.COM
Subject: Re: Balance
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Ann:
Yes, Shirley definitely has a problem with balance! She is always
falling or
stumbling over something. It probably has to do with the inner
ear being part
of the whole Mid-Face "problem area."
Alice in Orlando, Florida
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Date: Tue, 9 Feb 1999
13:38:30 -0600
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From: "MARK E. DUBAS"
<Murphy@PLATTEVALLEY.NET>
Subject: Re: Balance
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Hello..
I have a slight problem with balance...but am able to do anything
=
anyone elese can. I don't have a full range of motion in my ankles,and
=
my back is swayed, at least..that's my excuse..
Mark
----------
From: Howard & Ann
Sent: Monday, February 08, 1999 10:49 PM
To: APERT@LISTSERV.AOL.COM
Subject: Balance
A recent search identified a Swedish paper that specifically mentions
=
poor balance as being a characteristic of Apert Syndrome. It
certainly =
is with Amy but I cannot recall anyone else mentioning it.
Anyone else have experience with their children with Apert syndrome
=
having poor balance?
Ann
NZ
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Date: Tue, 9 Feb 1999
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From: Joseph Chan <jchan7@PACBELL.NET>
Subject: balance
MIME-Version: 1.0
Content-Type: multipart/alternative;
boundary="----=_NextPart_000_0018_01BE5425.D23EB280"
This is a multi-part message in MIME format.
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charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable
Roxanne is taking a beginning gymnastics class. Sure, she looks
awkward =
when compared to other 10-year-olds (she's recently sprouted up to
5 ft =
tall!). She can barely make it across the balance beam without
falling. =
She has yet to master a cartwheel or hanging on the bar.
Even so, I =
have to admire her effort and courage. Who am I to say "no"?
The main =
thing is that she's having fun and loves to go. =20
------=_NextPart_000_0018_01BE5425.D23EB280
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>Roxanne is taking a beginning gymnastics class. Sure,
she =
looks=20
awkward when compared to other 10-year-olds (she's recently sprouted
up =
to 5 ft=20
tall!). She can barely make it across the balance beam without=20
falling. She has yet to master a cartwheel or hanging on
the =
bar. =20
Even so, I have to admire her effort and courage. Who am
I to say=20
"no"? The main thing is that she's having
fun and loves =
to=20
go. </DIV>
<DIV> </DIV></BODY></HTML>
------=_NextPart_000_0018_01BE5425.D23EB280--
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Date: Wed, 10 Feb 1999
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Balance
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Thanks for all those prompt responses on the balance issue. It would be interesting to know the % of children with Apert S. who have balance problems versus the general population %. It is very easy to attach an issue to the syndrome because we watch our children so closely, whereas it may just be something that is an issue for x% of the population anyway. That is why I found it interesting to see it specifically mentioned in that paper.
Anyway - Amy has problems with cross-body coordination, her running is quite stilted and she wobbles badly when trying to walk along a beam or similar. She also falls over easily. Her way of dealing with it is that whenever she is asked to do a balancing-type action as in dancing, she will deliberately wobble so that she falls over, and in that way hopes to avoid the step. "But it's haaard!" "Yes dear, but that just means you have to try harder."
Having said that, she is improving and her running is much more fluid than it used to be. We obviously have to do a lot of work on confidence for these types of activities. Snow skiing isn't really a possibility - neither Howard nor I can stay up on the skis for any distance, and from memory the skifields were only open on a couple of days last year, so it isn't very reliable! But wouldn't I love to see Amy confidently shooshing down those slopes! I'll have to settle for seeing her not fall over on the dance floor.
As with most/?all? of our children, Amy has monocular vision and this may be contributing to her lack of confidence with things physical.
What also may or may not be connected is that she was a bottom shuffler, not a crawler. I know the therapists would say there was a link!
Lyn, Amy has annual followup for her feet when her orthopaedic surgeon
checks no serious problems are developing. He operated on them when
she was one, so is in his regular checkup schedule.
Cheers
Ann
NZ
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Swimming
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Found out at swimming on Monday that the lack of flexibility in Amy's ankles means her feet have been acting as brakes, and that is why she hasn't been progressing. After three years of lessons they finally got the owner in to observe her for half an hour - he then worked with her for 10 minutes and she "swam" more than half the length of the pool which she has never managed in all that time. "Swam" means she dog-paddled with a float on her back and breathed to the front instead of the side. As he said, we have to get her safe in the water first, then worry about the way she moves. Hey, that sounds just like what I've been telling them for some time!!
So, I recommend - instead of pouring more and more money into the pool, if your child is having swimming lessons and not progressing, get the expert in because the teachers just don't seem to be able to see outside their boxes!
Happy swimming
Ann
NZ
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Date: Wed, 10 Feb 1999
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Skin Thingummy
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re our Plastics Clinic yesterday:
Thank goodness that is over for another 6 months! These guys make it all sound sooo easy and sooo straightforward, so why should I worry.
The "skin thingummy" that Howard mentioned that Amy is to have removed is a sebaceous naevae (sp?). Apparently they are nothing to worry about, they don't become malignant until the person reaches 20+ years. With our little lady I set no store by statistics and will be very pleased to have them removed in case they decide to become malignant earlier. We are already dealing with pimples.
Regards
Ann
NZ
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Date: Tue, 9 Feb 1999
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From: Cristy Williams
<CARLEE0604@AOL.COM>
Subject: Re: Balance
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Ann,
You mentioned Amy having monocular vision. Could you please explain
what that
is. Carlee has had 2 Appt. with her Opthmologist and so far he says
everything
is okay. I was just wondering what is monocular vision.
Thank You,
Cristy and Carlee (8 months old)
in Florida
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Date: Tue, 9 Feb 1999
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From: "J. G. Lindamood"
<chanan8@JUNO.COM>
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Hello out there!!
I wanted to share with you all how moved I was to read about Roxie's
dance experience. I took "ballet" (I can hear the snickers!!)
when I
was in college as my art requirement. Lord knows my feet would
never
ever touch a real stage, (my rear end - probably) but it helped me
develop some balance as we have been talking about. It also gave
me a
new appreciation for the dance I never would have had otherwise.
I never
had a real problem with balance, other than when I stand up to fast
or
when I have a serious ear infection. Even then the balance issue
was
never serious.
Oh my, it's way past my bed time!! my coworkers are going to be
comparing me to the grouch in room 430 tomorrow!!!
Joanne
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Date: Tue, 9 Feb 1999
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From: "Brent E. Young"
<beyoung@IX.NETCOM.COM>
Subject: Re: Balance
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Howard & Ann wrote:
> A recent search identified a Swedish paper that specifically mentions
> poor balance as being a characteristic of Apert Syndrome. It
> certainly is with Amy but I cannot recall anyone else mentioning
it.
>
> Anyone else have experience with their children with Apert syndrome
> having poor balance?
>
> Hi Ann,
As far as I know, I never had any problem with balancing. However, I
was
never brave enough to walk across a balance beam(high). I have walked
across the low ones like they have in school playgrounds many times.
I
have made it almost to the end. I have never been able to do a cartwheel
or handstand either, partly because I don't have very strong arms and
I
just realized the other could be poor balance.
Also, I didn't learn to swim until approximately age 9. Even now, I
am
still a weak swimmer. I only swim with my head above the water, partly
because I can't get my ears wet. I have been underwater only a few
times. I seem to have this fear of going under. I am not one who enjoys
jumping in, either. I do get plenty of practice swimming in the summer
because I have a pool in my backyard. I am in there practically
everyday.
To Krista and Bob,
I have always wanted to try skiing, whether it be downhill or
cross-country, and perhaps snowboarding. I plan to do that once I reach
adulthood. Hearing about you makes me want to do it even more. Thanks
for the inspiration.
Well I better be going now. I will write again soon,
Kelly
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From: "Brent E. Young"
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J. G. Lindamood wrote:
> Hello out there!!
>
> I wanted to share with you all how moved I was to read about Roxie's
> dance experience. I took "ballet" (I can hear the snickers!!)
when I
>
> was in college as my art requirement. Lord knows my feet would
never
> ever touch a real stage, (my rear end - probably) but it helped me
> develop some balance as we have been talking about. It also
gave me a
>
> new appreciation for the dance I never would have had otherwise.
I
> never
> had a real problem with balance, other than when I stand up to fast
or
>
> when I have a serious ear infection. Even then the balance
issue was
> never serious.
>
> Oh my, it's way past my bed time!! my coworkers are going to
be
> comparing me to the grouch in room 430 tomorrow!!!
>
> Joanne
Hi its me again. I just realized something after reading
Joanne's
message that may have helped my development. I took ballet when I was
really little and as far as I can remember, I was able to do everything
just like everyone else.
Well I hope this helps.
Kelly
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Date: Tue, 9 Feb 1999
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From: rreed <rreed@CABLEONE.NET>
Subject: Re: balance
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Hi Everyboby, I just wanted to put my two cents in about balance. I
asked my
Mom and older sister about it and they said that as far as they could
remember I didn't have any trouble with it when I was little and now
that I
am older (44) I still don't have any trouble with walking, but I did
have
one doctor say that I waddled like a duck when I walked, but it must
not be
to noticable because nobody else seems to notice it. I never did learn
to
cartwheel and I think that was due to the fact that didn't want to
use
wrists to try. I was never into that stuff anyway. As for swimming
I never
was a great swimmer myself but I can swim underwater like a fish, but
I
guess thats due to having web feet, but then again Iam not into swimming
eather. I just like to get in and cool off and then get out, I guess
its my
age. I also want to say is about my eyes. When I was little I wore
glasses
but Iam not sure why, the next time see my mom and dad I'll ask
why, but I
do know that one time a eye doctor told me that my eyes take turns
seeing
and that I have good vision but that was 7 years ago and now that I
am older
my eye doctor says that I need glasses because of my age so I wear
glasses
when I read and when I drive.
Lynn- I just wanted to say is that some of my toenails
grow outward but
I just trim them down when they get to long and snag my stocking or
rub on
my shoes.
I just want to say Iam glad to hear that little
Carmen Rae and little
Asher are well and at home after their surgerys. I also want to say
that it
is so neat to hear about all the surgery techniques that they have
now. When
I was born all they could do was separate my thumb from ring finger
and my
ringfinger from my pointer finger. So when I hear about these surgery
and
how young they are doing the facial surgery it just blows me away.
The
medical people have come along way since I was born and thats great.
I also
want to say that you parents deserve a lot of prayers and alot of praise
for
going through all this and you guys go through alot more then kids
(oh don't
get me wrong we go through alot but we are a tough group) but you guys
go
through more by waitting in recovery rooms for us and going to all
the
doctors with us. and like my parents had to do watch us go through
hardships
and trials so you desurve a big hug and a lot of graditude. God bless
you
all. If there is any questions I can help you all just let me know,
I'll try
to anwers them if I can or ask my parents. Hope all is well back on
the East
coast and else where? Take care Maxine ( Max) Reed in raining Modesto,
Calif.
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: Balance
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Hi Cristy
Monocular vision is when they lack the field of depth. If you cover one eye you will get the idea. It isn't actually a problem for them because they have never known binocular vision.
If I understand it correctly, Amy actually uses her eyes independently, and when she is looking at you it shows because only one eye is actually looking AT you - they move at the same time but she (apparently) only sees through one at a time. Bit disconcerting for those first meeting her (if they notice, which most don't) but they get used to it - only her teachers have ever commented.
I'm no expert on clear explanations on this one, so if anyone else has a better explanation I would be interested to hear from them.
Our Vision Assessment team at the College for the Blind have also reported lack of 20 degrees of peripheral vision due to eye position, which probably explains why she is so easily lost - she doesn't see us going if we move away from beside her, and she will walk into things if she is walking and looking at us at the same time. Her eye specialist doesn't believe she has the lack, so it depends on who you believe. My personal belief is that she does lack this peripheral vision as it explains so much!
Good luck with the appointment.
Cheers
Ann
NZ
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Date: Wed, 10 Feb 1999
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Balance and Vision
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Thanks for sharing your experience Max and Kelly.
I am pleased to say Amy hasn't tried cartwheels yet - well, she says she is going to and waves her arms about a bit but that's as far as it goes - because with her shoulders she would go flat on her face!!
> but I did have
>one doctor say that I waddled like a duck when I walked,
Aren't some doctors just sooo empathetic! Maybe we need to create an award for the ones like that.
>I was never into that stuff anyway. As for swimming I never
>was a great swimmer myself but I can swim underwater like a fish,
but I
>guess thats due to having web feet,
Do you know the Celtic myth of the Seal Maiden? I think there may be a genetic link there. :-) It was retold in the film "The Secret of Roan Inish" that was out a couple of years back - a delightful movie.
Kelly, Amy loves going under the water despite getting the occasional ear infection as a result (she usually wears ear plugs but it isn't easy for me to monitor at school). She was on her own in the class once and when she felt she was getting too much 1:1 attention she just quietly sank into the water and stayed there. Eventually the tutor would tap her on the head and she would come up again for a huuge grin on her face. She did this 3 or 4 times during the class - she had a tutor with a sense of humour fortunately. What amazed me was how long she was able to stay under.
>I do know that one time a eye doctor told me that my eyes take turns
seeing
>and that I have good vision
That sounds like Amy. When you are looking a book do your eyes REALLY look at the pages independently? I have trouble understanding how the brain can deal with that!
Cheers
Ann
NZ
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From: "MARK E. DUBAS"
<Murphy@PLATTEVALLEY.NET>
Subject: Re: balance
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Hello....
=20
My toes were grown together at birth (still are) Nothing
was ever =
done to them that my Drs records indicate...I did have an "extra" bone
=
removed from the ball of my foot..was creating caluses (sp?) VERY sore
=
to walk on..and would turn raw in the swimming pool...where the floor
is =
rough...after surgery I had no problem.
When I swam, I used flippers on my feet to aid in moving
along...as I =
grew older I was able to go without them if I wanted
The toenails on my toes wrap around the end of each toe..except
the =
big toe...and the "pinky" toe..those are pretty much straight.
As far as Dentists...I never liked them very well...still don't...haha
=
Seriously..I think I was pretty tolerant of them.
Take Care...
Mark
----------
From: Rich Thornquist
Sent: Tuesday, February 09, 1999 10:30 AM
To: APERT@LISTSERV.AOL.COM
Subject: Re: balance
We have only taken Andrew to see an Orthopedist once and that was for
=
his
feet. The doctor said that there wasn't really a problem with
hips or =
feet at
the time (Andrew's feet are not that bad). Do you all think that
we =
should be
seeing him every year for a check up? I do see Dr. Upton at least
2 or =
3
times a year and he has always taken a great interest in both Andrew's
=
feet
and hands. I don't believe we have ever had x-rays of Andrew's
hips =
done
either. Because his feet point out somewhat, but so does my right
foot =
and I
don't have any problems with balance or hips. I'm soooooo confused!!!!
=
How
many more doctors do we need? I do know that they will not be
doing =
Andrew's
feet (seperating toes) because one of the bones shares two toes.
Unfortunately, that is the only problem. Dr. Upton will be going
in and
making wedges between each toe (of tissue) to cure the ingrown toenail
problem. Andrew's toenails seem to be curving outward, has this
=
happened to
any of you?
I guess it is becoming question time for Lynn. I have been quiet
for so =
long,
but watch out now, I'm on a role.
Well, I better get going, Andrew is insisting I go make lunch.
Talk to =
you
later.
Lynn
rlthorn@earthlink.net
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From: TFinch10@AOL.COM
Subject: Re: APERT Digest - 8 Feb 1999
to 9 Feb 1999 (#1999-39)
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Hi All,
Interesting question about balance. From 1 1/2 years (when Nate started
walking) to 4 years, Nate stumbled and fell more than the average child
but
well within a normal range. (My pediatrician's unscientific observation)
He's
got a couple of scars from face-plants to prove it. But he's got more
than
enough balance to enjoy skating, swimming, bicycle riding, roller-blading,
horse-back riding, tree-climbing, Tae Kwon Do (He's going to try and
break a
board at his next test). He does not have reliable depth perception
but
neither does our neighbor (adult) who has terrific hand-eye co-ordination.
Go
figure. With compensation that the child intuitively develops or is
actively
taught (ie Amy and her swimming teacher), plus determination/motivation
(ie
Roxy and gymnastics), the joint restrictions and vision difficulties
and inner
ear fluid build-up can be "gotten around". That's my two cents. Best,
Jeanne
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Date: Wed, 10 Feb 1999
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From: Apert Mail <apertmail@USWEST.NET>
Subject: Re: Balance
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Just a little from me, Courtney also has had no trouble with balance,
walking,
and running, she is even starting the one foot jummping and crossing
one leg over
the other while standing one one foot. :) all kinds of
new tricks.
Dawn
(Keizer, Oregon)
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From: Joseph Chan <jchan7@PACBELL.NET>
Subject: Re: balance
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>...I did have an "extra" bone removed from the ball of my foot..was
creating caluses (sp?) VERY sore to walk on..
Dear Mark,
I have been concerned about the calluses on
the balls of Roxy's feet,
too. Since she lacks her big toes, the "push off" for walking
lands on the
balls of her feet. I have taken her to a foot specialist.
We opted for the
conservative approach of having special insoles (expensive!) made for
her
feet to redistribute the weight and relieve the pressure from that
particular area. She tried them for a few months and concluded
they were
not working for her. The other option was surgery, but I am not
sure if
this is worth it at this point in time. Since she doesn't complain
about
soreness on her feet, my main concern is her balance and posture.
=========================================================================
Date: Wed, 10 Feb 1999
12:12:10 -0500
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From: Ryan Bradley
<Bradleys_r@COMPUSERVE.COM>
Subject: Re: Second child question...
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Hi there;
I must say that Michelle is very excited about the new baby. She watches
videos about how to take care of the baby and she is really excited.
She is
also 8 so it could be the age. I know that she has always has
my full
attention in everything and she will adjust, we talk about it that
when
baby comes it may be a little busier and she has to be the big sister
and
help mommy and daddy. We also plan to take her out by herself on a
daddy or
mommy outing at least once a month. We will let you know how it goes
this
summer, baby is due at the end of May.
With the dentist she is fine, she just says it tickles, I am sure she
is
nervous but she handles it well. She has been going since she was 3.
I think she is used to doctors, because she always does well with any
doctor.
God has really blessed us with a wonderful, happy, strong little girl.
Martha
Algonqui, IL
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Date: Wed, 10 Feb 1999
19:22:30 -0600
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From: Judy Amerman
<jamerman@UTI.COM>
Subject: misc
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After reading today's mail, I remembered that Nick's orthopedic Dr.
said
that many times that the bone on the ball of the foot has to be shaved
if
it starts to hurt.
Nick's balance is wonderful, although he looks a little funny when he
runs.
He will never be a marathon runner but that is ok!
Nick's dr. when checking Nick's joints just mentioned about the bone
and
the sockets. I didn't specify at the time that Nick' balance was good.
Well, we had a long day today. Nick was suppose to have surgery
at 10:30
and he was pretty hungry by the time he finally got there two hours
later.
He had a tube put in his right ear. The left one looks good.
But i am a
little nervous about something else.
While my friend Jacque, Pastor Chapel (not a joke), and myself were
talking, we got on the subject of moles.. I mentioned that Nick
had a mole
above his left ear and showed it to them. And I got shocked.
It looked
different. I don't remeber the black dot in the center of it
and the rest
of it looked somehow different too.
Needless to say, that was also removed and will be biopsied.
God, I just
hope there is not a problem there!
I think I really broke their rules .at the hospital today. this
was the
first surgery that was not done though Children's Memorial. At
Children's
I get to go to the operating room and stay with him until he is asleep.
Needless to say, that is not their rules at Provena St. Joe's in Joliet
but
I got to break everyone today go to the operating room there too.
It was
really funny because a nurse was asked to show me the way out and she
could
not figure out that someone dressed in scrubs like me had to be escorted
out. I think I was the first parent she had ever seen back there.
Another thing that they did today which I thought was real nice...
When we
checked in they had a nice sized white teddy bear for Nick. He
really
liked that.
Oh well, I guess I have rambled enough.
Judy
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Date: Wed, 10 Feb 1999
21:09:19 EST
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From: NephiRose@AOL.COM
Subject: Re: Taxes and Social Security
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Hello all,
I've been lurking, not contributing much lately :) Sarah Vicars
is doing
pretty good. Even though she's due for some surgeries, we're
holding off
until the summer. Figured she could use the break, having already
undergone 6
surgeries in 2 years.
My husband is doing taxes again this year (groan). Every year
I tell him to
take it to an accountant. He agrees but ends up doing it himself
LOL. Last
year was the first time we got Sarah on SSI. Anyone out there
know if SSI is
taxable? Totally clueless here. Tomorrow, I'll call IRS
(and be put on
hold..) :)
Sarah's balance at 2 1/2 years old is still really shaky, but now she's
walking and is able to walk up the stairs unassisted by me (yeah!)
My older
kids are teaching her how to do somersaults (sp?). Sarah's really
into
mimicking other people's actions. Literally. I really have to
watch my older
kids when they do something that is a bit risky for a 2 year old, like
sliding
down the banister!
Belinda
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Date: Thu, 11 Feb 1999
00:01:32 -0500
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From: Rich Thornquist
<rlthorn@EARTHLINK.NET>
Subject: Re: Second child question...
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Martha,
Well it looks like we will be discussing how our little ones adapt to
the new
babies together. I am due May 17. My husband intend to
do the same thing
about the outing once a month, but at the same time, there will be
Mommy and
Andrew outings as well as Daddy and Andrew outings. So it will
be at least
three a month. I'm not sure if Andrew will understand the concept
of outings
at first, but I'm sure he will catch on. He didn't understand
Playgroup at
first either, but now he knows and looks forward to it.
What is your actual due date?
E-mail me back personally and we can talk.
Lynn Thornquist
rlthorn@earthlink.net
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Date: Thu, 11 Feb 1999
00:21:44 -0500
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From: Rich Thornquist
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Subject: Re: Taxes and Social Security
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NephiRose@AOL.COM wrote:
Last year was the first time we got Sarah on SSI. Anyone
out there know if SSI
is taxable? Totally clueless here. Tomorrow, I'll call
IRS (and be put on
hold..) :)
>
Belinda,
I hope you get this e-mail before calling the IRS because I would hate
you to
spend the time talking with them. We have been on SSI since Andrew
was 3 weeks
old. When I spoke to our SSI office in the beginning, you do
not claim it as
income on your taxes. Massachusetts said that it is considered
the same as
welfare (not that I like to consider it that way). There is no
need to put it
anywhere on your taxes. Your SSI office probably has not sent
you a form of how
much you have received over the past year and there is a reason for
that. Maybe
it is different in your state, but I would assume that it is the same
everywhere.
It is assistance, not income!!!
Hope this helps. If you still feel the need to talk to someone,
you will probably
get through to your local SSI office alot quicker than the IRS.
Lynn
=========================================================================
Date: Wed, 10 Feb 1999
23:13:05 -0600
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From: "Allison's: GO
USA, Inc" <gousa@GOUSAINC.COM>
Subject: Re: Taxes and Social Security
In-Reply-To: <51908b75.36c23bcf@aol.com>
Mime-Version: 1.0
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Hi Belinda!
Do not call the IRS and get put on hold. All income is taxable
unless it
is specifically excluded by law. However, you are in luck. :)
This is what it says on page:
<http://www.irs.ustreas.gov/prod/forms_pubs/pubs/p90701.htm>
Supplemental security income (SSI) payments:
If you received any SSI payments during the year, do not include these
payments in your income. They are not taxable for federal income tax
purposes.
Laura and I thoroughly enjoyed you and Bill coming to visit us when
you
came through Kansas City. Come back again soon!
Mike Allison
=========================================================================
Date: Wed, 10 Feb 1999
22:43:40 -0800
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From: rreed <rreed@CABLEONE.NET>
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Hi Everybody, Just wanted to say to Ann about my vision when I
read I see
the page independently. I love to read mysterys and romance novels
all the
time and don't have any trouble. I could read all day if I had time
but
since I am married and have a 15 year old there's no time. I should
wear my
glasses but they make me sick to my stomic. Everybody in my family
says that
since I turned over 40 I should wear them but I feel I do fine without
them.
I think the reason I get sick when I wear them is because Iam not wearing
them enough and not giving me a chance to get use to them. Iam just
stuborn
that way.
I also want to comment on
the calluse problem, I have the same
problem as MarK. I have calluses on the buttom of my feet, Iam not
sure
about a bone being there, but there is a calluse. I went toa foot doc.
and
he scraped them down but I think they have come back. I do wear a special
in
sole that helps alot, but I also wear wide size rebocs
and for my dress shoe I wear aerosoles that are like sandles. I do
have
trouble wearing some shoes like that have a seam sewn on the side because
I
have some bones that stick out the outer sides of both of my feet.
I had
them removed once about 30 years ago but they just grew back. So now
I just
try and findshoes that don't have a seem that will rub on that bone.
If Roxy
doesn't seem to conplain about her feet I wouldn't worry about it until
she
started to conplain about her feet. I don't have problems with my feet
to
often, only when I walk for along long time. but then I think everybody
gets
tired if they walk to long.
Well I better close it's late and I need to cover my plants
they say its
going to freeze. First it was raining only 2 days ago and now it's
freezing
what next in for Modesto, Cal. Happiness always Maxine(Max) I hope
everybody
else is warm and dry wherever you are!
=========================================================================
Date: Wed, 10 Feb 1999
23:12:30 -0800
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From: Joseph Chan <jchan7@PACBELL.NET>
Subject: Re: feet
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Thanks for the wise advice, Maxine!
Rose (Roxy's mom)
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Date: Thu, 11 Feb 1999
14:43:26 -0800
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From: Christine Clark
<apertnet@IX.NETCOM.COM>
Organization: Apert Support & Information Network
Subject: Re: Twins with Apert
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Jeanne,
I know exactly who you are asking about. Unfortunately, I am back
in
lock up (the hospital) and I do not have my roster of families with
me
to give you the information. I am scheduled for surgery tonight
and
with probably be here for couple more days but I will try to get the
info. to you as soon as I can after I get discharged. If you
don't hear
from me for too long, give me a reminder.
Christine Clark
Apert Support & Information Network
P. O. Box 1184
Fair Oaks, CA 95628
=========================================================================
Date: Fri, 12 Feb 1999
12:57:51 -0800
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From: Richard Tait
<rjrtait@MARS.ARK.COM>
Subject: Please help ASAP
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I am in need of some immediate information!
My apert daughter has been booked for surgery soon, and she is getting
major
hand surgery (everything at once) because of her post-op history of
coming
close to death almost every time. The rationale is that if they
do
everything at once, the risk is only once as well.
Here's my question:
Why do some doctor's use casts and some don't. I had infection
problems
before, and had antibiotics administered during surgery. It seems
to me
that it would be safer to put on soft dressings that can be changed
more often.
I thank you in advance for any advice you may give us in making the
best
decision for our little one.
By the way, the operation is Feb. 24th, but decisions need to made now.
The
24th is a work slow down day here in B.C., and so we want everything
planned
right.
Rene and family
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Date: Fri, 12 Feb 1999
16:47:59 EST
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From: Jenngram@AOL.COM
Subject: Re: Please help ASAP
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Jordans surgeon does gauze dressings and gives us a splint to put on
his
arm....wrist to elbow....This way we can see the fingers adn tell if
there is
adequate blood flow, and so we can change dressings after a week to
be sure
all is well. Its worked for us thus far!!!
Good Luck, and we'll be thinking of ya'll
Jenn(tampa/St. Pete)
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Date: Fri, 12 Feb 1999
20:16:51 EST
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From: Cristy Williams
<CARLEE0604@AOL.COM>
Subject: Re: Please help ASAP
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Rene,
I have a 8 month old "Carlee" that has had 2 hand surgeries so far.
Both times
she had hard fiber glass cast from her hands to her shoulders. I think
they
have to do it to protect the operation site. Our doctor said she would
be in
them for 2 weeks. The first surgery she had to release her thumbs,
she managed
to get out of both her cast ( on 2 different occasions) before any
2 weeks.
HAHA!! This last surgery to release her pinkys, the casts
stayed on but we
had them take them off early because we were afraid that
they were infected
. But they weren't. I am sorry to hear your little one has difficulties
with
the anesthesia. How old is your baby? Good luck on the 24th and
we will be
thinking of you all. Keep in touch.
Cristy and Carlee
in Florida
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Date: Sat, 13 Feb 1999
00:05:21 -0500
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From: Rich Thornquist
<rlthorn@EARTHLINK.NET>
Subject: Re: Please help ASAP
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Rene,
When my son Andrew had his hand surgeries, his doctor used fiberglass
casts from
his hands all the way up to his shoulders. We had bilateral surgeries
both times.
The reason Andrew's doctor used casts was to protect the skin grafts.
He did not
want any chance of Andrew moving his fingers and the skin grafts letting
go. We
did not have the worry of blood flow because Andrew has type 1 hands.
They left a
tip of one finger (thumb for one surgery and pinkie for the other)
out of the cast
so you could make sure that it was still pink. The casts were
on for a total of 3
weeks, but after ten days, the cast was changed. Andrew is a
little Houdini and
slipped out of his casts both times. I would suggest the casts
because of no
possibility of them getting hurt or banging the newly healing sights.
The
bilateral surgery did not phase Andrew at all the first time (he was
5 months), but
the second time around he was just a year and he was quite frustrated.
Good luck with the surgery. All fingers at once is alot to do.
That is alot of
skin grafts. In your case I would opt for the casts. Good
luck with either
decision. I'm sure whatever you choose to do will be fine.
Lynn Thornquist
rlthorn@earthlink.net
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Date: Sat, 13 Feb 1999
22:24:03 +1300
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: Please help ASAP
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Can't help with definite information on the why, but Amy has had all three versions - open wounds when her hands were attached to her groin, bandages on some occasions and casts on another, and it was the same surgeon each time. Each time both hands were involved so there was no risk of her using one hand to pick at the other. From memory they left some skin showing on each hand so they could check on circulation and infection potential.
Usually they don't operate on both sides of one finger because of the stress on the graft site, and in that case it may not really matter what type of dressing they use. But maybe in your case casts would be necessary to avoid risk of pulling on the stitches by your little one trying out her fingers - though she would probably move them inside a cast anyway.
There are various schools of thought about changing dressings, one is that the more often you change them the more risk there is of damaging the delicate new tissue, and another is that by changing them you are removing the "old" tissue to allow more rapid healing.
Sounds like you need to see your surgeons again and maybe the charge nurse and get them to tell you why they do what they do.
All the best for the surgery.
Regards
Ann
NZ
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Date: Sat, 13 Feb 1999
07:49:30 -0800
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From: Apert Mail <apertmail@USWEST.NET>
Subject: Re: Please help ASAP
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Rene~
when our Courtney had hers done the first time she was little, still
a crawler, so
she had half casts. it covered her fingers for portection, and then
came down under
her hand and up her arm. She wore for a little while then it was soft
dressing,
which we then removed and cleaned, and re put all the med. and dressing
back on.
The second time was just bandages, which we did all the same stuff
to as before.
that worked out the best for us, changing and cleaning the hands all
the time.
Best of Luck
Dawn
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Date: Sat, 13 Feb 1999
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There are various schools of thought about changing dressings, one is
that the more often you change them the more risk there is of damaging
the delicate new tissue, and another is that by changing them you are
removing the "old" tissue to allow more rapid healing.>>
We changed Courtneys all the time, it involed, soaking the hand in
half water half peroxide, rubbing the fingers softly removing old skin,
and the extra from the grafs, this put her to sleep everytime, someone
had to sit behind her and hold her up so I could finish. But it let her
feel touch, and I would kiss the new fingers and her hand, and show her
that it was all ok. She loved it. We would pat her hands dry and reapply
"scarlet red" it is
a mesh time meterial the is red because of the medincine, and it is
placed between the fingers so the skin grafs do not grow back together.
And then we would wrap ace bandages around. It is not all that hard
and the more you do the better you get at it. =)
Hope any of this helps
Dawn
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Date: Sat, 13 Feb 1999
15:24:46 -0600
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From: Michael Sharrow
<msharrow@CAMALOTT.COM>
Subject: RED System
Comments: To: Crouzon Discussion List <crouzon@u.washington.edu>
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Here is an explanation for the RED System (Rigid External Distraction):
This information was sent to me by Dr. Jeffrey Fearon, The Craniofacial
Center, Dallas, Texas
RIGID EXTERNAL DISTRACTION SYSTEM (RED SYSTEM)
The use of a halo-distractor is very new in craniofacial surgery.
As of
February 1, 1999, I have treated ten patients with this system over
the past
year, and I know of two or three other cases which have been done around
the
country aside from my ten. In my opinion, it represents one of
the greatest
advances in craniofacial surgery since I have been in practice.
This system
consists of a frame which is affixed to the skull through screws on
either
side of the head. From a perpendicular bar is attached two screws
which I
ask the parents to tighten twice a day. These screws are attached
to wires
which are in turn attached to a dental splint which is secured to the
upper
teeth. When I first saw this device I was quite hesitant to place
it on a
child, however, in my experience they are very easily tolerated by
children
and many children have not wanted the device removed because of the
extra
attention they received while wearing one. This device is used
to bring the
mid-face forward in an operation called a LeFort III. With a
traditional
LeFort III, cuts are made across the nose, underneath the eyes, and
down the
sides of the cheekbones so that the upper jaw can be slid forward.
The
upper jaw is then held forward by wiring the teeth closed and bone
grafts
are then taken to fill in the spaces left by the advancement.
With the RED
system, the same cuts are made for a LeFort III, however, the mid-face
is
not immediately brought forward; therefore, the teeth never need to
be wired
closed. More importantly, it is not necessary to take bone grafts
to fill
in the gaps left by the typical LeFort III advancement so the operation
is
shorter. Instead, as the face is slowly brought forward by turning
the
screws twice a day the body fills in the bone by itself. After
distracting
twice a day over a three to four week period, the device is left on
for an
additional three to four weeks to make sure all the bone is well healed;
then it is removed with a five minute brief anesthetic. Almost
all the
children report absolutely no discomfort when the screws are turned
to
slowly bring the mid-face forward. Perhaps this is because each
complete
turn of the screw brings the mid-face forward only one-half (0.5) millimeter
(by comparison there are approximately twenty-five millimeters to one
inch).
Perhaps the best thing about the RED system is that the mid-face can
be
brought forward much further than with a traditional LeFort III, and
it is
my hope that by using this device I may avoid ever having to repeat
this
operation in teenage years (which is the standard). Patients
who have had
both operations say the procedure with the RED system is easier.
The patient will be in the hospital for approximately six days and would
need to stay in Dallas for several days after discharge. Postoperative
care
instructions and a tracking sheet will be given at this time.
The patient
would then return seven to eight weeks later for removal of the splint
and
RED system under anesthesia.
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When our son Jonathan had
his hand surgeries, he didn't have casts. We used
gauze, which was removed after seven days at a doctor's appt.
The doctor then
wanted us to remove the dressings once a day and allow him to soak
his hands
while in the bath. After bath we very liberally applied bacitracin/polymixin
ointment and used a surgical nonstick gauze called Aquaphor between
the
fingers to protect the sites. We cut the strips ourselves to
the right length
and folded them in a V-shape. It was important to really make sure
that we got
the Aquaphor well to the bottom of the new web space by bringing the
v-shaped
qauze down very gently with a long sterile swab. Then we would re-wrap
the
whole hand in qauze. Unfortunately Jonathan never enjoyed the
wrapping and
unwrapping of his hands. It was just one of those things that
had to get
done.
Maybe the type of covering
used for the hand surgery is determined by the
kind of surgery done to the hand. I think it is in general very
common to use
a cast when the doctor has to put pins in finger or thumb bones.
If it is
just separation of soft tissue without any bone concerns, a cast may
not be
necessary. Let your doctor know what you think your daughter
would respond
better to, and ask him to use that information in deciding what is
best for
your daughter.
Best of Luck-The Gentz's
=========================================================================
Date: Sun, 14 Feb 1999
06:52:41 -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: "D. Jefferson"
<djeff@MIDWEST.NET>
Subject: Re: RED system
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Dear Michael,
This is similar to the procedure Seth had done in September. However,
Dr.
Marsh did not use a dental splint. The process worked very well
and Seth
was not in any pain. Seth was in hospital five days and it only
took 10
days to advance the mid-face to the desired position. Dr.
Marsh was very
pleased with the results.
It is always interesting to hear what other doctors are doing.
Dori A. Jefferson
djeff@midwest.net
=========================================================================
Date: Sun, 14 Feb 1999
16:48:05 EST
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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From: TDeakins1@AOL.COM
Subject: Re: Please help ASAP
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You didn't say how old your daughter is. Our's is twelve and has
had several
hand surgeries (...and, craniofacial). When she was little, she
would
literally sling the cast off. Soft bandages were the only viable
choice (both
the doctor and we learned together). Later, she had casts and
we never had
any problems with infection. I will say that they changed her
casts two or
three times during her healing.
-Tony Deakins
=========================================================================
Date: Sun, 14 Feb 1999
17:29:55 -0800
Reply-To: Information exchange and Internet
safe haven for Apert Syndrome
and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender: Information exchange and
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From: Richard Tait
<rjrtait@MARS.ARK.COM>
Subject: surgery
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Thank you to everyone who answered my question about casts for hand
surgery.
It gives me some info to be able to discuss with the specialists.
We will
let you know how Julia makes out. Surgery is always pretty scarry
for us as
Julia doesn't do well post-op. We have all sorts of changes to
make to the
"routine" when she goes in. Her file has a lot of red flags to
notify the
surgeons; the file is too big to read each time. I'm sure that
all of you
know what I mean here.
Thanks again, and hope everything is well with everyone; I'm behind
on my
reading again.
Rene, Julia, and family