Hi Raquel,
Nate's last cranial surgery was seven years ago. (He's 8 years oldnow). He
still has "holes in his head". There are several spots in his skull bone that
have not completely closed. Little gross but you can push down and feel his
brain pulsing. He has enlarged ventricles but no hydrocephalus, no shunt.
Every time we take him in for a check up, the surgeons offer to fix those
holes but he's lived with them fine for seven years now and who wants cranial
surgery if you don't absolutely have to have it?? BUT...we make sure he wears
a helmut, religiously, when he bikes, plays hockey or skates. One day, I found
him climbing a pine tree with his brother, probably thirty feet off the
ground, happy as a lark, and it took every ounce of willpower to wave
cheerfully and NOT freak out. So holes happen...Good luck with Nicole.
Best, Jeanne in snowy Boston
=========================================================================
Date:         Fri, 29 Jan 1999 08:17:36 -0500
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:         ROBIN L HILL <CARMENRAE@PRODIGY.NET>
Subject:      Re: Soft Spots/After Surgery
MIME-Version: 1.0
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Just wanted to add some input on shunts (at least the little that I know).
We (like all of you) were worried sick about Carmen maybe needing a shunt.
I can remember in the beginning saying, "Just as long as she doesn't need
that shunt thing"  Anyway, at 3 months Carmen got her shunt.  Knock on
wood, but we don't even know it is there!  Luckily she has had no problems
(I know this is not always the case); however her neurosurgeon is very
nonchalant (sp?) about doing revisions, etc. if needed.  I really don't
worry about the shunt much anymore.  Maybe those of you that are looking at
the possibility of a shunt should get some information on them to reassure
yourselves as to how common shunts are.  I think that will ease some of the
anxiety.  I was not aware that accident victims and many others often get
them (not just our kids and others born with anomalies).  Anyway, I have
been in the WORRY seat about shunts and just wanted to try to ease your
minds a little.

Robin Hill
----------
> From: Jack and Raquel <jara1@BELLSOUTH.NET>
> To: APERT@LISTSERV.AOL.COM
> Subject: Soft Spots/After Surgery
> Date: Thursday, January 28, 1999 10:44 PM
>
> Hi everyone,
> It's been a long time since I've asked some of my famous questions....So
> here it goes...
>
> It's been six months since Nicole's first cranial surgery and she just
> had an appointment last week with her neurosurgeon and he was a bit
> concerned that the soft spots that were left open after the surgery have
> still not closed.
> We asked him if that was a problem he said he is not too concerned right
> now, he told us that sometimes they never close and the solution to that
> is when she goes in for her next cranial they would do bone grafts??
> But that could also be a sign of hydrocephalous which she has no
> symptoms of, he is going to order a CT scan in April which will be 9
> months after surgery to see what's going on, I guess maybe he's hoping
> that they will close up more by then.
> Anyway I am trying not to worry because of course I am sure we all fear
> the SHUNTS and I always hoped we wouldn't have to go there.  I don't
> think the doctor is too worried because he would have order the CT scan
> sooner.
> But my question is has this happened to any of you??? Any impute would
> be very helpful...thanks all...
>
> Pat, I've been in contact with Dori and they are doing just fine...Her
> words exactly "Seth is a picture of health"  They are coming down  to
> Miami in March for Seth's hand surgery so we will have a chance to spend
> some time with them at that time.  It's such a coincidence Seth hand
> surgery is scheduled for March 15 and so is Nicole's second hand
> surgery....So we'll be a pare....of nervous nillies....
>
> Any way hope to hear from you all...
>
> Raquel Miller....
=========================================================================
Date:         Fri, 29 Jan 1999 08:26:11 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:         Jenngram@AOL.COM
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AHHHHH...correct you are...it was Seldane that was causing all the problems, I
believe.....And I think Claritin has been proven safe and taken its place on
the market

Jenn(Tampa/St. Pete)
=========================================================================
Date:         Fri, 29 Jan 1999 08:30:04 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:         Jenngram@AOL.COM
Subject:      Re: apert show & Carroline's Surgery
Mime-Version: 1.0
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Jordan also had the "raised soft spots" and as many people proballt remember,
I was FRANTIC to say the least.......after much imput form everyone here, and
MANY trips and tests at the neurologists (I made them PROVE to me nothing was
wrong) I was finally convinced all was fine. They don't bulge quite as much
and I am neurotic about checking to make sure I can still feel his pulse
adequately throughout the day. My husband always gives me a hard time,
wondering what I will do when hes grown and can't check his soft spots
anymore, figuring I'd be doing it until he went off to college if they were
still present....

Jenn(Tampa/St. Pete)
=========================================================================
Date:         Fri, 29 Jan 1999 09:21:17 -0800
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:         Anna Gong <qigong@LTIONLINE.COM>
Subject:      Re: Soft Spots/After Surgery
MIME-Version: 1.0
Content-Type: text/plain; charset=us-ascii
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Hi,
Just want to say that Vivi's soft spot is still not completely closed (she
is 3 yr 5 months old) but it's getting smaller very slowly. Her doctor at
Boston Children's wasnot concerned and had never mentioned any connection
between the slow closing and  hydrocephalus (spelling?). (Vivi dosn't have a
shunt).
Qing
=========================================================================
Date:         Fri, 29 Jan 1999 17:13:57 -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:         Laurie Bailey <jkb@ELPASO.NET>
Subject:      Re: Soft Spots/After Surgery
MIME-Version: 1.0
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Hey everbody,

Laurie Bailey here. Jacob also experienced the open soft spots after his
first cranial surgery. What they ended up doing with him is another cranial
surgery. They didn't use any bone grafts but they did use plates. Hope it
helps.

Laurie
jkb@elpaso.net

----------
> From: Jack and Raquel <jara1@BELLSOUTH.NET>
> To: APERT@LISTSERV.AOL.COM
> Subject: Soft Spots/After Surgery
> Date: Thursday, January 28, 1999 9:44 PM
>
> Hi everyone,
> It's been a long time since I've asked some of my famous questions....So
> here it goes...
>
> It's been six months since Nicole's first cranial surgery and she just
> had an appointment last week with her neurosurgeon and he was a bit
> concerned that the soft spots that were left open after the surgery have
> still not closed.
> We asked him if that was a problem he said he is not too concerned right
> now, he told us that sometimes they never close and the solution to that
> is when she goes in for her next cranial they would do bone grafts??
> But that could also be a sign of hydrocephalous which she has no
> symptoms of, he is going to order a CT scan in April which will be 9
> months after surgery to see what's going on, I guess maybe he's hoping
> that they will close up more by then.
> Anyway I am trying not to worry because of course I am sure we all fear
> the SHUNTS and I always hoped we wouldn't have to go there.  I don't
> think the doctor is too worried because he would have order the CT scan
> sooner.
> But my question is has this happened to any of you??? Any impute would
> be very helpful...thanks all...
>
> Pat, I've been in contact with Dori and they are doing just fine...Her
> words exactly "Seth is a picture of health"  They are coming down  to
> Miami in March for Seth's hand surgery so we will have a chance to spend
> some time with them at that time.  It's such a coincidence Seth hand
> surgery is scheduled for March 15 and so is Nicole's second hand
> surgery....So we'll be a pare....of nervous nillies....
>
> Any way hope to hear from you all...
>
> Raquel Miller....
=========================================================================
Date:         Fri, 29 Jan 1999 19:35:15 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:         ETolson643@AOL.COM
Subject:      Re: Soft Spots/After Surgery
Mime-Version: 1.0
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Raquel:

Tim (17yrs.) also has some soft spots on his skull; although they are smaller
and fewer since his midface advancement two years ago.  The soft spots never
seemed to cause a problem.  Tim doesn't have a shunt and no hydrocephalus.  We
also make sure he wears a helmet when he rides his bike and now that he is
into skiing; he wears one skiing, as well.

Beth Tolson
=========================================================================
Date:         Fri, 29 Jan 1999 20:08:19 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
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From:         Shirley Tanner <TANRANCH@AOL.COM>
Subject:      Re: Soft Spots/After Surgery
Mime-Version: 1.0
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Raquel,
     When they did Collins' cranial surgery they didn't have enough bone to
complete the skull either & so it left "soft spots" which are still there
today-after 6 years. They too said it would be fixed by bone grafts with his
next cranial surgery. He has never had a shunt or any problems because of the
soft spots.

Shirley Tanner
Hartford, Alabama
=========================================================================
Date:         Fri, 29 Jan 1999 22:22:47 -0600
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              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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From:         Chad & Denise Graham <cgraham@INFOAVE.NET>
Subject:      soft spots, asorbable plates
MIME-version: 1.0
Content-type: text/plain; charset="us-ascii"

Jenn,

        All of Daryl's softspots did close except two really small ones on
the top of his head.  he has a new one that is rather big toward the front
of his head on top.  That was so they could use that bone to put in for his
brow bone.

Pat,

        We used titanium the first time, but the resorbable this time.
 

                                                        Denise Graham
=========================================================================
Date:         Fri, 29 Jan 1999 22:32:17 -0600
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              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
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From:         Chad & Denise Graham <cgraham@INFOAVE.NET>
Subject:      softspots
MIME-version: 1.0
Content-type: text/plain; charset="us-ascii"

It is my understanding that softspots are not a sign of hydrocephalus
unless the softspots is bulging a little or feels tight by the end of the
day after they have been up for a while.  If you can see the softspot beat
up and down with the pulse rate then everything is OK.  Daryl needed a
shunt because his softspots were bulging a little by the end of the day or
when he got real upset they would get really tight.  That is what my neuro
told us.

                                        Denise Graham
=========================================================================
Date:         Sat, 30 Jan 1999 09:59:02 -0500
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From:         Timothy Holt <tholt@WEBTV.NET>
Subject:      Catching up!
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Hello everyone! I hope all is well.  It has been hard to find time to
respond, even though I read all the entries.  Thanks for all the
information from everyone.  How ever I have a few more questions........
    Courtney is 8 months old, she still isn't sitting alone, is this
normal?
    Around what age do these children begin to walk? Are there any
"delays" as far as walking?

We do not have a cranio-facial team yet.  Should we have???? All we have
at this point is a plastic surgeon, and a peditrician.  Courtney  can't
bend her fingers.  She had type 1 hands, they have all been released.
Does this require extensive physical therapy.  Is occupational therapy
usually intense?

Lisa~
  I have read that Apert is undetectable by ultrasound. We had 8
ultrasounds, and we didn't have a clue!

Alice~
  Courtney had an MRI.  They used this test to show us her brain an
skull.  They were almost touching.  Then is when her doctor said we
needed to do a cranial surgery right away.  Her brain didn't have any
room to grow.  I am not sure what the name of the proceedure is, but
they took part of the top part of her skull out, and put asorbion plates
in her forehead, and one small one on each side of her temples.  She
also had the bone around her eyes pulled forward.

Does anyone know the name of this proceedure? Please let me know.

Sorry this letter has been so long, but haven't written in a while, and
it is a rainy day......Good time for catching up!!!!!!

Tim & Mechelle Holt address:tholt@webtv.net
=========================================================================
Date:         Sat, 30 Jan 1999 11:14:03 EST
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              and other craniofacial anomalies <APERT@LISTSERV.AOL.COM>
Sender:       Information exchange and Internet safe haven for Apert Syndrome
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From:         BBarn60368@AOL.COM
Subject:      Re: Catching up!
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Tim and Mechelle,
I don't remember how old Shirley was when she sat alone, but I remember it was
a long time.  I believe the problem was her head.  It was so big, she had a
hard time holding it up.  She was 15 mos. before she walked.  She hardly ever
crawled, she rolled instead.

As for not having a cranial-facial team yet, I feel sure that if Courtney has
had surgery to create the soft spots, then surely she has a neurosurgeon.  The
neurosurgeon and the plastic surgeon usually work together for this surgery.
Maybe the plastic surgeon just spoke for both of them when getting with you.

As for therapy, Shirley didn't really get any therapy until she was 3 and went
to school in a preschool program.  Her teachers, at the time, couldn't believe
she had never received therapy.  She did great on her own.  She had to.  I
really can't understand therapist's view point, sometimes.  Nothing like
necessity as a teacher.  I really want Shirley to learn to do things that work
and are available to her in the real world.  I don't like it when they create
all these abnormal things for her to use.  How do the rest of you feel about
that?

Alice in Orlando, Florida
=========================================================================
Date:         Sat, 30 Jan 1999 12:13:52 -0500
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Sender:       Information exchange and Internet safe haven for Apert Syndrome
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From:         The Stroupes <stroupes@MINDSPRING.COM>
Subject:      Re: Catching up!
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Hi Tim & Michelle
Zachary is 9  and has had a craniolfacial from the time he was 2 mos old. We
have changed some of the docs on the team for various reasons.  We are very
fortunate as UNC has an established and very well known craniolfacial center
& we go thru them for everything.  Zach did not sit up until 10-11 mos bcz
of the size of his head; never did the typical crawl due to partial fusion
in wrists and limited range of motion in shoulders--he did do what is called
a "combat" crawl which got him to where he wanted to go.  Zach did not walk
until 18 mos due to all the limitations. Zach has also recieved all
therapies since he was 3mos old.  Dan & I both work in rehab and early
intervention is the key.  Good luck & keep in touch.
Dan &Judy Stroupe
stroupes@mindspring.com
-----Original Message-----
From: Timothy Holt <tholt@WEBTV.NET>
To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM>
Date: Saturday, January 30, 1999 9:59 AM
Subject: Catching up!
 

Hello everyone! I hope all is well.  It has been hard to find time to
respond, even though I read all the entries.  Thanks for all the
information from everyone.  How ever I have a few more questions........
    Courtney is 8 months old, she still isn't sitting alone, is this
normal?
    Around what age do these children begin to walk? Are there any
"delays" as far as walking?

We do not have a cranio-facial team yet.  Should we have???? All we have
at this point is a plastic surgeon, and a peditrician.  Courtney  can't
bend her fingers.  She had type 1 hands, they have all been released.
Does this require extensive physical therapy.  Is occupational therapy
usually intense?

Lisa~
  I have read that Apert is undetectable by ultrasound. We had 8
ultrasounds, and we didn't have a clue!

Alice~
  Courtney had an MRI.  They used this test to show us her brain an
skull.  They were almost touching.  Then is when her doctor said we
needed to do a cranial surgery right away.  Her brain didn't have any
room to grow.  I am not sure what the name of the proceedure is, but
they took part of the top part of her skull out, and put asorbion plates
in her forehead, and one small one on each side of her temples.  She
also had the bone around her eyes pulled forward.

Does anyone know the name of this proceedure? Please let me know.

Sorry this letter has been so long, but haven't written in a while, and
it is a rainy day......Good time for catching up!!!!!!

Tim & Mechelle Holt address:tholt@webtv.net
=========================================================================
Date:         Sat, 30 Jan 1999 12:26:38 -0500
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:         Timothy Holt <tholt@WEBTV.NET>
Subject:      Courtney
Content-Type: Text/Plain; Charset=US-ASCII
Content-Transfer-Encoding: 7Bit
MIME-Version: 1.0 (WebTV)

We are seen at the Baptist Hospital here in North Carolina.  Bowman
Gray/ Wake Forest University.  It is in Winston-Salem.  Yes, the plastic
surgeon had a neurosurgeon present in the operating room, but was never
introduced.  As for early intervention......
When Courtney was just big enough to put in her swing, I tied some
rattles on a string, and strung them across the legs (in front of her).
She gets a lot of stimulation.  Here plastic surgeon said the best
physical therapy would be lego's ( the large one's) .  She compromised
by using her feet while her hands were bandaged up!  She can get on her
hands and knees, but just can't seem to pick that heavy head up!  so,
wiggles her butt to get her where she is going!!!! She has learned to
push herself backwards in her walker. The forward gear is broke!! ha ha!
She loves to jump alot.  Anyone else experience this?
Thanks for the advice!

Tim & Mechelle Holt address:tholt@webtv.net
=========================================================================
Date:         Sat, 30 Jan 1999 12:10:11 -0600
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From:         sbc <sbc@COMWARES.NET>
Subject:      soft sopts and hand surgery
MIME-Version: 1.0
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Jenn you said Jordan had the raised soft sopts was it like the bone was =
growing back rounded to?  Carroline's soft sopts are on the sides at the =
top of her hed and it is like the bone is even growing back in rounded =
but it is still soft in the middle but the docter says she soes not have =
hydrocephalus.  It islike maybe the boneis growing back weird or maybe =
she is fussing back together.  Can they fuss back together?  If anyone =
has some information on this problem I would really appreciate some feed =
back I am concerned because it is really noticeable since she doesn't =
have much hair.  Also our doctor said that the next hand surgery to =
release the ring finger and the middle finger he will have to sew it to =
her groin to release them is it always done that way?  God Bless.

Stephanie & Carroline Tingley
sbc@comwares.net
 

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<META content=3Dtext/html;charset=3Diso-8859-1 =
http-equiv=3DContent-Type>
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<BODY bgColor=3D#ffffff>
<DIV><FONT color=3D#000000 size=3D2>Jenn you said Jordan had the raised =
soft sopts=20
was it like the bone was growing back rounded to?&nbsp; Carroline's soft =
sopts=20
are on the sides at the top of her hed and it is like the bone is even =
growing=20
back in rounded but it is still soft in the middle but the docter says =
she soes=20
not have hydrocephalus.&nbsp; It islike maybe the boneis growing back =
weird or=20
maybe she is fussing back together.&nbsp; Can they fuss back =
together?&nbsp; If=20
anyone has some information on this problem I would really appreciate =
some feed=20
back I am concerned because it is really noticeable since she doesn't =
have much=20
hair.&nbsp; Also our doctor said that the next hand surgery to release =
the ring=20
finger and the middle finger he will have to sew it to her groin to =
release them=20
is it always done that way?&nbsp; God Bless.</FONT></DIV>
<DIV><FONT color=3D#000000 size=3D2></FONT>&nbsp;</DIV>
<DIV><FONT color=3D#000000 size=3D2>Stephanie &amp; Carroline =
Tingley</FONT></DIV>
<DIV><FONT size=3D2><A=20
href=3D"mailto:sbc@comwares.net">sbc@comwares.net</A></FONT></DIV>
<DIV><FONT size=3D2></FONT>&nbsp;</DIV></BODY></HTML>

------=_NextPart_000_0004_01BE4C49.7C5632A0--
=========================================================================
Date:         Sat, 30 Jan 1999 13:26:38 EST
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              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:         Jenngram@AOL.COM
Subject:      Re: Catching up!
Mime-Version: 1.0
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It sounds like the procedure was an orbital advancement...where they bring out
the forhead a bit.....Jordan's plastic surgeon also built a nasal bridge so he
wouldn't look any more different than necessay....basically if we need glasses
we're in good shape b/c there is something for them to rest on....so far, we
have no such need...thank goodness for small blesssings..

Also, I believe most of our kids...and most of the adults as well, can't bend
the fingers b/c of the lacking knuckle....Jordan has gone to OT since his
first finger release...(also type 1 hands), his therapist and I often debate
on its usefullness for him, b/c he has no problems adapting to use
them.....and we still have 2 surgeries to go (one release on each hand).....as
a matter a fact he just took a fine motor skills test (Bailey's assessment I
think it was) and scored perfectally up to par...despite surgeries and the
differences in his hands. We were all pleasantly suprised. So we continue in
OT, feeling it may help him to a degree, but mostly he does it all on his own.

I can't remember his milestones..Sorry.....I know I must be a horrible mom,
all I do recall is he sat before he crawled, and walked at 11 mos, but Jordan
was standing u from about 5-6 months....we think it was b/c he was so bored
and couldn't do anything w/ his hands....but like all Non-Apert children, I
have learned these things just happen when they do. Jordan has been so pre-
occupied w/ running and climbing, that he barely says more than 4 words, and
NONE of which are mommy!!!! He says fun words....ball, all done, Yeah!, Alex
(our dog)....Oh well.......

Anyway, hoped this answered a few of your questions....and as Don told me more
than once when I was worried......Be careful what you wish for, b/c you may
just get it!!!!!

Jenn(Tampa/St. Pete)
=========================================================================
Date:         Sat, 30 Jan 1999 13:38:12 EST
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From:         Jenngram@AOL.COM
Subject:      Re: soft sopts and hand surgery
Mime-Version: 1.0
Content-type: text/plain; charset=US-ASCII
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Jordans soft spots don't really "bulge" like they did when he was a few months
post-cranial....seems as hes gotten older they say more level. His are getting
smaller, bone is filling in, but he still has 2 areas that are open and
pulsating nicely might I say. Aside form the sheer terror of watching him
climb and jump off furnature, its not a big deal....BUT....he has as much hair
as a 5 year old, and THICK too!!!!.....he gets haircuts at least once a
month...But this makes the open areas way less noticable, so I don't really
focus on it as mucha s I use too...although he does get inspected pretty
regularly, although now its camaflouged as a kiss on the head, and he isn't
forced to cope w/ a neurotic mother!!!!!

Jenn(Tampa/St. Pete)
=========================================================================
Date:         Sat, 30 Jan 1999 13:54:46 -0700
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From:         baconsmith <bluenose@TELUSPLANET.NET>
Subject:      Re: Catching up!
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Hi Mechelle.  Here are a couple of non-Apert perspectives for you.  My son
Thomas still couldn't hold his head up for long at age four months.  The
docs did a U/S for hydrocephalus but found nothing.  However, my husband has
a big noggin and our son is just like him.  Don't forget to look at some of
the family factors.  Also, Thomas is long and lean and couldn't quite get
his balance until he was nearly sixteen months when he started walking alone.

Second perspective:  my daughter EvaJessie   (Tessier facial cleft) wasn't
sitting alone until past six months and didn't walk until 15 months.   So
Courtney sounds perfectly within a reasonable range to me.
 

Evajessie had a similar procedure to what you described.  It was an orbital
advancement.  It was done when she was four years old.

Take care.
Pat in Calgary
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Date:         Sat, 30 Jan 1999 16:15:10 -0500
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From:         Timothy Holt <tholt@WEBTV.NET>
Subject:      Re: soft sopts and hand surgery
In-Reply-To:  sbc <sbc@COMWARES.NET>'s message of Sat, 30 Jan 1999 12:10:11
              -0600
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Stephanie~
   That is the way Courtney's fingers were made!  Skin grafts for both
surgeries.  They were taken from the groin both times, and the same
place.  It left a minimal scar on each side. She had the release of her
Index fingers and deepening of the web on the pinky on Nov 10, 1998,
the release of the middle and ring fingers on Jan 6th of this year.
I hope this info helps!!!
Have a good day to all!

Tim & Mechelle Holt address:tholt@webtv.net
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Date:         Sat, 30 Jan 1999 17:49:47 EST
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Congratulations Beth and Steve on Twins.  Hope the delivery will go well.
What is the due date?

Glad to hear that Daryl is recovering from the surgery.  I am sure he feels
better with less pressure.

Good luck to Jordan on Monday on the hand surgery.

Janine
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Date:         Sat, 30 Jan 1999 17:59:19 EST
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From:         Yonstein@AOL.COM
Subject:      Re: Soft Spots/After Surgery
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glad to hear everyone else's child has soft spots, too.  Emily has them also
and yes, hers pulse too.  We always comment on the shape of her head in  the
bath.  You can really see the bumps all over then.

Janine
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Date:         Sat, 30 Jan 1999 18:03:05 EST
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From:         Yonstein@AOL.COM
Subject:      Re: Walking, sitting, etc.
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Emily is 18 months old and still not walking yet, however, she is cruising all
over the place.  Her Physical Therapist hopes that by 2 years old, but you
never know.  She did sit up by herself later than usual also and crawled later
also.

I do know from the list that most of the kids do these things later, due to a
number of factors; surgeries, low muscle tone, etc.  However, some of them
have been right on schedule.

Janine
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Date:         Sun, 31 Jan 1999 14:53:09 +1300
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From:         Howard & Ann <howrdnan@IHUG.CO.NZ>
Subject:      Re: Courtney
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Kia Ora Tim and Michelle

>She can get on her
>hands and knees, but just can't seem to pick that heavy head up!  so,
>wiggles her butt to get her where she is going!!!!

Amy was a bottom-shuffler and only crawled on rare occasions.  It only became a problem once she was walking and tried to get under the table - she didn't know to bend over low or get onto her knees, fortunately she has a hard head.  It is actually an advantage if you have to deal with foot surgery - Amy just continued bottom-shuffling around with both feet in plasters, it certainly didn't slow her down.  AND she could always see what was going on.

I know other children have laid on their backs and bent their necks until the nearly-top of their head was on the floor, pulled up their feet, straightened their neck, and then repeated the action, and moved around the floor in this manner.  They must have developed very strong neck muscles.

The problem with not crawling is the lack of cross-body or alternate-side movement which stimulates both sides of the brain and helps develop coordination.  We can see this in Amy and encourage the teacher-aide to use Brain Gym, though Amy resists this because no-one else is doing it.  Fortunately she is beginning to take an interest in dancing, which should help.

Cheers
Ann
NZ
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Date:         Sat, 30 Jan 1999 21:56:38 -0500
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From:         Rich Thornquist <rlthorn@EARTHLINK.NET>
Subject:      Re: Soft Spots/After Surgery
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Raquel,

Please do not worry to much about the soft spots not healing yet.
Andrew
had his first cranial surgery when he was 3 months old and he is now 2
1/2
years.  There are two small soft spots in the back of his head that have
not
completely healed yet.  His surgeons said that it would take at least
two
years and then maybe some more.  His nuerosurgeon is not worried one
bit,
and is actually extremely pleased with the way his head is growing and
healing.  We have no signs of hydrosephalus (sp.) and don't anticipate
it
either.  That is why they did Andrew's post-exterior release when he was
3
months.  This way there is no need for a shunt.  Any other questions for
me
and you can e-mail me directly.

Hope this helps.

Lynn Thornquist
rlthorn@earthlink.net
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Date:         Sun, 31 Jan 1999 00:54:15 EST
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From:         Nodrmat26@AOL.COM
Subject:      My 2 cents
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Hello All!  Zoey's Mom here.
Just to comment on the sitting up alone thing.  Zoey also did this late, and
was/is a "bottom shuffler".  She did learn how to crawl and was crawling for a
little while and I suppose she just simply discovered how hard it was on her
little knees and figured scooting was better.   She just turned two and isn't
walking yet, but I know that it's hard to learn how to walk when every other
month you're off your feet in the hospital bed.

I don't think Zoey has any soft spots.  Should she?  Her head is large, but is
pretty normal shaped (atleast to me it is...maybe I'm just so used to it)  She
still needs her midface advancement.  Zoey's big sister had a pretty big head
too, so I think Zoey was bound to have the big head anyway!  Ha  ha!
Goodnight!
Christina
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Date:         Sun, 31 Jan 1999 09:01:04 EST
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From:         ETolson643@AOL.COM
Subject:      Re: Catching up!
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Hello to all

Tim was also late walking...18 months if I remember correctly...he never
crawled but scooted on his rear.  I worried about the late walking too but it
seems to have all worked out.  He rode a bike at a normal age and has been
able to do most gross motor activities within a normal range of functioning.
He wants to get his license and is really hounding us about it...I am not sure
if Mom and Dad are ready for that!!!

Beth Tolson
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Date:         Sun, 31 Jan 1999 15:49:55 -0600
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From:         Carol Graves <tcgraves@BELLSOUTH.NET>
Subject:      Re: Catching up!
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Nicholas didn't sit up until he was about 9 or 10 months old, and didn't
walk til 18 months old.  He did start crawling at about 8 months....
Carol
-----Original Message-----
From: Timothy Holt <tholt@WEBTV.NET>
To: APERT@LISTSERV.AOL.COM <APERT@LISTSERV.AOL.COM>
Date: Saturday, January 30, 1999 8:59 AM
Subject: Catching up!
 

Hello everyone! I hope all is well.  It has been hard to find time to
respond, even though I read all the entries.  Thanks for all the
information from everyone.  How ever I have a few more questions........
    Courtney is 8 months old, she still isn't sitting alone, is this
normal?
    Around what age do these children begin to walk? Are there any
"delays" as far as walking?

We do not have a cranio-facial team yet.  Should we have???? All we have
at this point is a plastic surgeon, and a peditrician.  Courtney  can't
bend her fingers.  She had type 1 hands, they have all been released.
Does this require extensive physical therapy.  Is occupational therapy
usually intense?

Lisa~
  I have read that Apert is undetectable by ultrasound. We had 8
ultrasounds, and we didn't have a clue!

Alice~
  Courtney had an MRI.  They used this test to show us her brain an
skull.  They were almost touching.  Then is when her doctor said we
needed to do a cranial surgery right away.  Her brain didn't have any
room to grow.  I am not sure what the name of the proceedure is, but
they took part of the top part of her skull out, and put asorbion plates
in her forehead, and one small one on each side of her temples.  She
also had the bone around her eyes pulled forward.

Does anyone know the name of this proceedure? Please let me know.

Sorry this letter has been so long, but haven't written in a while, and
it is a rainy day......Good time for catching up!!!!!!

Tim & Mechelle Holt address:tholt@webtv.net
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Date:         Sun, 31 Jan 1999 17:49:30 EST
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From:         "(Marianne Camous)" <Camous@AOL.COM>
Subject:      Re: Courtney
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In a message dated 1/30/1999 9:26:48 AM Pacific Standard Time, tholt@WEBTV.NET
writes:

<< She can get on her
 hands and knees, but just can't seem to pick that heavy head up!  so,
 wiggles her butt to get her where she is going!!!!  >>

You should have Early Intervention services available through the state. Often
these kids have to work on trunk strength, etc. before they can get upright.
That's where pT/OT come in. OT is not usually necessary early for hand issues
as kids tend to
go for it" when (or before) their fingers are unwrapped. Some have tactile
aversion in their hands and OT can help with that. Sounds like you are doing
many of the same things at home but a good therapist in valuable in providing
guidance for these efforts. Often they can fascilitate getting assistive
devices like a standing frams for a short period to help build strength as
well as give you the support to do necessary things that your child doesn't
like to help build skills or strength.

Marianne
San Carlos, CA
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Date:         Sun, 31 Jan 1999 18:03:39 EST
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From:         "(Marianne Camous)" <Camous@AOL.COM>
Subject:      Re: soft spots and hand surgery
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In a message dated 1/30/1999 10:07:19 AM Pacific Standard Time,
sbc@COMWARES.NET writes:

<< Also our doctor said that the next hand surgery to release the ring finger
and the middle finger he will have to sew it to her groin to release them is
it always done that way? >>
NO! Evan's surgeon in Pittsburgh took skin from his lower abdomen using a
"bikini" incision and took skin from there. It has worked well. I can't
imagine having the hand attached to the abdomen....:(

The bony edges around Evan's surgical soft spots also started to get that
"crater" shape last year. After a repeat CT scan, etc etc...and some Zantac
for that feeling in my  stomach, it was all deemed part of the odd bone growth
associated with this condition and they would correct it with a future
surgery.

Marianne
San Carlos, it's raining again, California
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Date:         Sun, 31 Jan 1999 20:39:55 -0500
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From:         Jack and Raquel <jara1@BELLSOUTH.NET>
Subject:      Many Thanks
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Happy Superbowl Sunday to all.....

I just finished watching Half-time which is the extent of my Superbowl
viewing.  Since our Dolphins are not in it well not too amusing for me.
Although I do try to occasionally catch a Blimp view of my parents home
which is not too far from the stadium that's about it.

Anyway I want to thank all of you that responded to my soft spot
question, it does put my mind at ease.  Although as I stated before our
neurosurgeon was not concerned I just wanted to makes sure that this was
not just something that Nicole had, so it seems like it is pretty
common.

Christina (Zoeys mom) too funny that is exactly how Nicole gets around
she's also a bottom shuffler.  Once in a blue moon she'll to a few
seconds of crawling but she also has learned that IT HURTS...especially
that we have wall to wall ceramic tile in our home (not too cushy) this
is why I'm so glad she is sporting that helmet at least when she falls
back that helmet really protects her.  But I think we have about one
month or so left of the helmet.  But it's really helped her out a lot
her head is nice and round.  The only thing is boy does she have a big
forehead (lots of bangs for this girl).

Well talk to you all soon.

Raquel Miller in Sunny South Florida.....
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Date:         Sun, 31 Jan 1999 23:10:27 +0000
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From:         "J. G. Lindamood" <chanan8@JUNO.COM>

Hello!

Here's my 2 cents:

Crawling was never my thing either.  I scooted on my rear.  Mom says I
could get from point A to point B as fast as any one else my age.  Mom
said she thought I didn't crawl because my hands were bandaged when it
was that time.  I'll have to get with my mom on what age I was when I
walked.  I think I was 14 months...

I want to encourage Beth to allow Tim to get his license.  I got mine
when I was 16. My mom had some doubts/worries too about my ability to
drive, hold on to the wheel, etc.. But I know for me, having that piece
of plastic in my pocket did wonders for my self esteem.  You can always
limit the privilege of use of the car.

Was this Super Bowl Sunday?! :-)

Joanne, in Ohio
there are sprouts of plants emerging from the earth.. could this mean
spring is coming soon!!!