Hi Christina,
The first few months Allie did not like her Passe Muir either, but
we
just kept trying and eventually got used to it. She also cried
because
it changed the way she was breathing. I hope in your case Zoey
is also
able to get rid of her trach. How old is Zoey now? That is really
a
cute name. We have had probably 5 different surgeries that were
"supposedly" going to get rid of the trach. The first two that
didnt
work were devastating to us emotionally. Now, we dont set our
hopes up
too high. Allie did not have any problems with her trach until
this
past December, for whatever reason it started pushing itself out and
then we couldnt get it back in. Scar tissue had built up and
kept
pushing it out. After numerous trips to the ER and a couple of
surgeries, we actually went 3 long days and nights with out it.
Okay
during the day, but at night Allie had to keep waking herself up to
breathe. Not a pretty picture for parents or child. By
the third day
we said this is definitely not getting better and thats when I had
to
pick up Allie from school and she pleaded Mom cant I go a year without
surg. I knew both of us were at our limit. The hole had closed
up and
they basically had to do a fresh trach. Couple of months later
they
went in, cleared up all the scar tissue and he tried to create a larger
nasal airway. He did and she is breathing better at night, less
secretions, but still not restful sleeping. So once again we are waiting
until she grows more and another advancement when she is 12 or 13.
The
trach has been part of our life for so long that it really is no big
deal to Allie or us, it just would be nice for her to be able to go
swimming and really dive in.
I hope you dont give up on the valve as Zoey gets older because it
will
really help in her speech development. It will come, just have
faith
and just try anything you can think of to try to get her to be used
to
it. Allie can speak so clearly and well now, I have almost forgotten
all the speech therapy we have been to. I hope you have a good
speech
therapist because it really makes a difference. We have had good
and
bad. I hope some of this helps. Best wishes with Zoey and
her speech.
Let us know what happens.
Best Regards,
Claudia
Nodrmat26@AOL.COM wrote:
>
> In a message dated 11/27/98 9:15:02 PM Central Standard Time, pcbaas@HOME.COM
> writes:
> << 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.
>>
> Claudia~
> I sure wish Zoey would tolerate her Passy muir valve. When
we put it on her,
> she cries and tries to pull it off and stops breathing. I heard
Zoey cry for
> first three weeks of her life and it was VERY sad to not be able
to hear her
> all this time. I'm so glad she's learned to make sounds...it
almost makes me
> cry sometimes. I'm hoping her trach will be able to come out
after her second
> head surgery next summer...that would be nice. Thanks for your
input.
> Christina
> S.A.
=========================================================================
Date: Mon, 30 Nov 1998
23:49:14 -0800
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From: Robyn Johnston
<robyn@ORDATA.COM>
Subject: Re: Sinusitis
Mime-Version: 1.0
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Hi Ann,
Not exactly sure what is in Bloom around here - it is the middle of
winter
in the Pacific North West. This means cool and very rainey -
mold spores
would be my first guess. We are dry and warm on the inside
though.
Allergies have already been ruled out. Brenna's drainage was tested
a week
ago for allergies and came back negative... ? I am sure her anatomy
is
mostly to blame, just not sure how to clear up those 'little' sinuses
;~)
Hugs
Robyn
>Hi Robyn
>
>What's in bloom around your home?
>
>Regards
>Ann
>NZ
>
>
=========================================================================
Date: Tue, 1 Dec 1998
23:39:17 +1300
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: Sinusitis
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Hi Robyn
This is a tricky one isn't it. Hope you can sort it out soon, as it does make one feel rather miserable.
Cheers
Ann
NZ
At 11:49 PM 30/11/98 -0800, you wrote:
>Hi Ann,
>
>Not exactly sure what is in Bloom around here - it is the middle of
winter
>in the Pacific North West. This means cool and very rainey -
mold spores
>would be my first guess. We are dry and warm on the inside
though.
>
>Allergies have already been ruled out. Brenna's drainage was
tested a week
>ago for allergies and came back negative... ? I am sure her
anatomy is
>mostly to blame, just not sure how to clear up those 'little' sinuses
;~)
>
>Hugs
>Robyn
=========================================================================
Date: Tue, 1 Dec 1998
23:39:15 +1300
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From: Howard &
Ann <howrdnan@IHUG.CO.NZ>
Subject: Re: Self Esteem
Mime-Version: 1.0
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Kia Ora Tony
It is reassuring to hear a father is concerned about this!!! Howard quietly accepts everything and I am the one worrying in our household.
> My daughter is approaching
>adolescence, is in middle school, and is beginning to pay attention
to her
>place in the social order of her peers.
Amy is probably going to have more craniofacial surgery in the next year or so to try and avoid too many problems during those adolescent years, so I can understand your concerns.
The two papers I have that cover aspects of this are:
Children with Apert Syndrome: Developmental and Psychologic Considerations by Leslie Biron Campis, published in the 1991 Clinics in Plastic Surgery
and
The Teasing Syndrome in Facially Deformed Children by Jeffrey M Gerrard,
published in A.N.Z J. Fam. Ther., 1991, Col.12, No.3, pp.147-154
Gerrard is a Child Psychiatric Consultant and is/(was?) attached to
the Australian Cranio-Facial Clinic in Adelaide. This was a pilot
project to obtain more information about teasing and its effect on children
attending that clinic. "An innovative treatment method was used to teach
the children to make an imaginary forcefield which they could use to beat
teasing..."
The children referred had various craniofacial syndromes, including
Crouzon and Apert, Moebius, Treacher Collins, etc.
If you are interested and can't get copies locally let me know your address and I can post copies over.
Regards
Ann
NZ
=========================================================================
Date: Tue, 1 Dec 1998
10:41:04 -0500
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From: Marilyn Williams
<marpratt@BELLSOUTH.NET>
Subject: note
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Hi everyone, enjoy the information we have read here. since we're new
to
aperts it has be a big help.we are lucky Carlee, doesn't have most
of
the problems that alot of apert kids.hope everyone who is do for surgery
is doing well. remember Carlee on Jan 7 talk to you all later. Carlee's
Gram Marilyn
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Date: Tue, 1 Dec 1998
16:38:43 -0500
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From: Richard Thornquist
<rlthorn@EARTHLINK.NET>
Subject: Re: Zoey's Surgery...A Success!!...I
think!
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Robin,
Just to let you know that Dr. Upton did not do both sides of one finger
either. I never really thought about it and why he didn't, but
what your
doctor says sounds pretty reasonable. Andrew's first surgery
was the pinkie
and the index fingers, then the ring and middle fingers were separated
just
before his first birthday. Both surgeries were done bilaterally
with a cast
up to his shoulders. When we start thinning down his fingers
once he turns
3, it will be two fingers at a time, but only one hand at a time.
Hope this helps.
Lynn Thornquist
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Date: Tue, 1 Dec 1998
17:00:49 -0500
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From: Richard Thornquist
<rlthorn@EARTHLINK.NET>
Subject: Thank you!!
MIME-Version: 1.0
Content-Type: multipart/alternative;
boundary="----=_NextPart_000_00BC_01BE1D4C.25AF0660"
This is a multi-part message in MIME format.
------=_NextPart_000_00BC_01BE1D4C.25AF0660
Content-Type: text/plain;
charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable
I just wanted to thank everyone for their responses to my questions
=
about the earplugs. I definately think that I will try the silly
puddy. =
So the nylon plugs are better than the silicone? Is that
what I am to =
understand? I may just have to get more from his ENT this time
around =
as well. Those were much easier to put in. I just needed
something for =
right now, because our follow up is not for another two weeks.
Thank you again.
Lynn Thornquist
------=_NextPart_000_00BC_01BE1D4C.25AF0660
Content-Type: text/html;
charset="iso-8859-1"
Content-Transfer-Encoding: quoted-printable
<!DOCTYPE HTML PUBLIC "-//W3C//DTD W3 HTML//EN">
<HTML>
<HEAD>
<META content=3Dtext/html;charset=3Diso-8859-1 =
http-equiv=3DContent-Type>
<META content=3D'"MSHTML 4.72.3110.7"' name=3DGENERATOR>
</HEAD>
<BODY bgColor=3D#ffffff>
<DIV><FONT color=3D#000000 size=3D2>I just wanted to thank everyone
for =
their=20
responses to my questions about the earplugs. I definately
think =
that I=20
will try the silly puddy. So the nylon plugs are better than
the=20
silicone? Is that what I am to understand? I may
just have =
to get=20
more from his ENT this time around as well. Those were much
easier =
to put=20
in. I just needed something for right now, because our follow
up =
is not=20
for another two weeks.</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT color=3D#000000 size=3D2>Thank you again.</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV>
<DIV><FONT color=3D#000000 size=3D2>Lynn Thornquist</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT> </DIV></BODY></HTML>
------=_NextPart_000_00BC_01BE1D4C.25AF0660--
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Date: Tue, 1 Dec 1998
20:03:00 EST
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From: Nodrmat26@AOL.COM
Subject: Re: Zoey...Update
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In a message dated 12/1/98 12:29:15 AM Central Standard Time, pcbaas@HOME.COM
writes:
<< I hope in your case Zoey is also able to get rid of her trach.
How old is
Zoey now? That is really a cute name. We have had probably 5
different
surgeries that were
"supposedly" going to get rid of the trach. >>
Claudia~
Gosh, I hope that the next two surgeries will allow her trach to come
out.
I'd be very upset if they didn't. I firmly believe that
if I'd know more
when she was first born, that she wouldn't have needed a trach at all.
She
breathed find all by herself for three weeks...it was just when she
was eating
that she needed extra Oxygen. Maybe she could have gotten a g-tube
and eaten
through her stomach...I don't know, it just makes me wonder sometimes.
However, we are very used to the trach and will continue to try and
get her
used to the valve and when she's ready...she's ready.
Christina
S.A.
=========================================================================
Date: Wed, 2 Dec 1998
22:35:44 -0800
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From: Claudia Salazar
<pcbaas@HOME.COM>
Organization: @Home Network
Subject: Re: Zoey...Update
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Christina,
You are so lucky that you didnt get a G tube, they wanted that for
Allie
when she was born and I really fought against it and I am so glad I
did. I figured if she could suck she could eat. Many kids
that I have
met through my experiences with therapy, hospital stays etc. have much
difficulty in getting rid of a G tube once its inserted. Believe it
or
not, eating has alot to do with speech development. The kids
that have
a G-tube from birth then have difficulty accepting the different
textures in their mouth. I only learned this after going to speech
therapy that the simple task of eating was instrumental in speech
development. It is amazing all the things we take for granted
when they
happen with no problems.
Sounds like Zoey is not as dependant upon the trach as Allie was in
the
beginning. Allie was intubated until they put the trach in at
13 days
old. They thought Allie had choanal atresia also which is a complete
blockage of the nasal area, but thank goodness she didnt. She
has a
natural airway just too tight to allow air to pass at night when her
tongue relaxes. It will be at least another 3-4 years before
we try any
thing again. We're ok with that rather have Allie get good rest
at
night so shes not tired just trying to breath.
Sounds like Zoey has a pretty good chance of getting rid of the trach,
that would be wonderful for her (and you). I'll put your family
in my
prayers.
If you ever have problems with the trach site getting red and irritated
there is this great stuff called sween creme. I went to a skin
fair
when Allie was a baby, and sampled every type of creme and that is
what
worked best.... It is also great for diaper rash, which used to happen
sometimes when Allie would have 2-3 rounds of antibiotics.
Good attitude on the passe muir, sometimes they have to go through
so
much, that some of the battles are just not worth it. Thats about
how I
felt after 5 years of eye patching that never helped. You know
best for
your daughter!!!!!
Claudia Salazar
>
> In a message dated 12/1/98 12:29:15 AM Central Standard Time, pcbaas@HOME.COM
> writes:
> << I hope in your case Zoey is also able to get rid of her
trach. How old is
> Zoey now? That is really a cute name. We have had probably
5 different
> surgeries that were
> "supposedly" going to get rid of the trach. >>
> Claudia~
> Gosh, I hope that the next two surgeries will allow her trach to
come out.
> I'd be very upset if they didn't. I firmly believe that
if I'd know more
> when she was first born, that she wouldn't have needed a trach at
all. She
> breathed find all by herself for three weeks...it was just when she
was eating
> that she needed extra Oxygen. Maybe she could have gotten a
g-tube and eaten
> through her stomach...I don't know, it just makes me wonder sometimes.
> However, we are very used to the trach and will continue to try and
get her
> used to the valve and when she's ready...she's ready.
> Christina
> S.A.
=========================================================================
Date: Thu, 3 Dec 1998
20:27:43 -0600
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From: Becky Mitchell
<beckym@HAL-PC.ORG>
Subject: Trachs
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In a message dated 12/1/98 12:29:15 AM Central Standard Time, pcbaas@HOME.COM
writes:
<<I firmly believe that if I'd know more when she was first born,
that she
wouldn't have needed a trach at all
She breathed fine all by herself for three weeks...it was just when
she was
eating that she needed extra Oxygen. Maybe she could have gotten
a g-tube
and eaten through her stomach...
Christina
S.A.>>
===========================================================================
Christina,
I haven't really written very many emails since I joined the listserve
-
mainly because I get so far behind reading that I feel my response
is old
news! However, when it comes to trach experiences I like to add
my opinion.
Please, try not to second guess your decision to put the trach in.
When I
look back at information given to us when our son was born that indicated
respiratory distress as a major cause of death in babies with Apert
syndrome that was enough to make a believer out of me.
My son, Matthew, was intubated immediately after birth due to severely
under-developed nasal passages. (Choanal stenosis) At 3
days old he had
his first surgery to dialate the passageways. Stents were left
in to
ensure the passageways didn't close back up. They hung out of
his nose
about 1/4 of an inch with a small safety pin going through each to
keep
them from going in to far. Then we had to suction him (with a
catheter
just like you use for trachs) all the time! I think having something
in
the nose just created more drainage!
Anyway, when Matthew was about 4 months old, it was suggested we get
a
g-tube because he was having a lot of difficulty eating and breathing
at
the same time. (They called it an incoordinate suck/swallow.)
So, we
agreed - with reservations. The surgery got cancelled because
his lungs
were very congested and they decided to keep him in the hospital and
clear
him up quicker to get the surgery done. During the first night
he was
desaturating to very low numbers --50 or 60. There were times
when 4
nurses, a doctor and who knows who else were standing by his bed scratching
their heads because he wasn't turning blue or showing much outward
signs of
distress. It was scary...we had an apnea monitor at home because
of the
nasal stents and that never once showed signs of distress. Here
you think
you have everything under control and guess what - you don't.
Consequently, he ended up getting trached too. We were devasted
and
totally against the trach at first but after many conversations with
the
ENT, Pulmonary Doctor, respiratory therapists, etc. we decided it was
the
safe thing to do. It would give him a GOOD airway.
Matthew was able to get the gtube removed at age 2 and the trach removed
at
age 3. He received speech/oral-motor therapy and occupational
therpy
during this time which I believed helped alot. Also, we kept
encouraging
him to use a pacifier which really helped alot too. We had a
pulse
oximeter at home to monitor his oxygen because at times he needed it.
My
husband and I kept good records of his progress and communicated his
progress with his doctors. We basically told them when we felt
enough
improvement had occured in his breathing and eating to warrant whatever
testing they needed to do to descide if the g-tube or trach could be
removed.
As for the passy meur valve, you have to slowly get used to it.
Put it on
for 5-15 minutes each day for a week, then increase to 30 minutes,
etc. by
watching your child's breathing. Since the valve is a one way
valve (they
inhale through the valve and exhale through their mouth or nose)it
gets
them one step closer to normal breathing.
Sorry this is so long, please email me if you want to discuss this further.
Fellow Texan! (Houston)
Becky Mitchell
beckym@hal-pc.org
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Date: Thu, 3 Dec 1998
21:36:32 +0000
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From: "J. G. Lindamood"
<chanan8@JUNO.COM>
Subject: Re: Self Esteem
Hello out there!
Ann, I would like copies of the papers you mentioned and am willing
to
pay for the postage. Do you still have my address?
My home smells like left over McDonald Fries. Ugh. My mom
was here for
our fine dining for the week, she splurged and bought McD's for me!!!
So far the Lactaid in the morning is taking care of the tummy problem!!!
Hooray!
About sinus problems, I had them all of my life and things really got
bad
right before my septoplasty surgery in 1995. When the splints
came out,
it was as if I never breathed before! The passage was so clear and
free
of gunk. It was such a relief to get that opened! I am still
some what
dependent on Claritin, living here in Sinus Valley, what can I expect?
But it's nothing like it was before!
Hope all is well!
Joanne in very warm Ohio - at least I'm not alone!
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Date: Fri, 4 Dec 1998
19:47:00 EST
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From: IrsNav@AOL.COM
Subject: Early Childhood Services
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Hello
This is Ann Gentz, Jonathan's
mom. Jonathan is 2 &1/2 years old. My husband
has a new job and our family is considering moving to the extreme southern
portion of Indiana. Does anyone live in this area? Would
anyone be able to
tell me of the availability of Early Childhood Services in this area.
Jonathan is pretty normal with his development, but considering that
he has
had seven surgeries I am sure that he could benefit from some catch
up help.
He is also quite shy about being alone with unfamiliar people.
I figure we
need to do whatever we can to ensure he can enter kindergarten on an
equal
standing with his peers. We currently live in Appleton, Wisconsin the
services
here would be four mornings a week in a school setting with the school
district having the responsibility to transport the child from home
and back.
This service starts when they are three. Before this services
are called
Early Intervention:Birth to Three.
Thanks in advance for your help and have a blessed holiday season!
The Gentz's - Jeff, Ann, Rachel and Jonathan
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Date: Sun, 6 Dec 1998
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From: Yonstein@AOL.COM
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I am just checking my mail. Had only 3 since December 1st.
Janine
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Date: Sun, 6 Dec 1998
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From: NephiRose@AOL.COM
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Same here. Was getting worried. Betcha everyone's out Christmas shopping ;)
Belinda