Hi, sorry 'bout the long subject line, but I've been getting junk
sent to me throught this site. I wish those people would leave this
site alone...
Anyways, Devon is doing good. A lot of changes going on...He is 5 1/2
now and getting bigger every month. His speech is improving and with
that the behavior part is also getting better. Allergies are getting
the better of him for now, it is the season...He has an appiontment
to see a allergy and asthma specialist this month. Hopefully we will
get some good advise. He gets so out of breath. His oxygen levels
drop and heart rate goes way up anyone have same or simular symptoms?
This is nothing new, but the doctors that were trying to figure it
out left the childrens hospital last year..bummer as Devon says. They
could not figure if it was his heart or lungs or a combo. Any one
have problems with sensory intergration/dysfunction with their weaver
syndrome kids? This has been a continueing issue. He also is
autistic, so the sensory thing might be more from that then weaver
syndrome????
Hope to hear from someone soon, I'm feeling all alone again. People
try to say they understand, but unless you have lived in my house or
walked in my shoes, I sincerely doubt anyone understands what me and
my family have been going through.
I hope all the little ones are doing great and continueing to thrive
and gain milestones. Again I hope to hear from someone soon. Take
care ALL!!
April in washington

I have been reading your posts for a while now but have never posted
myself.  My husband and I have a daughter diagnosed with Weaver
syndrome at the age of two.  She is now eight years old, and doing
great.  She is 5'5" tall and weighs about 117lbs.  She wears a shoe
size of 13 in womens.  We were told by Dr. Weaver at our last visit
in December that she will stop growing when she hits puberty
(between 9 years and 11 years old), then have another growth period
after puberty.  This makes us wonder how tall she will finally be.
She has slowed to 4 inches per year now.  Abby is very healthy,
unlike many of your children.  We have been very fortunate to have
only allergies, colds, pneumonia, and some kidney infections. Abby
is in the 3rd grade and doing very well, testing at the low range on
her grade.  She still reads on a 1st grade level, but does very
well.  She has a great memory for things that interest her.  She is
very social and loves everyone, always kind to everyone.  She is
very sensitive also, picking up on emotions very quickly.  Abby
plays basketball at our church in the Upward Basketball program, her
height is an advantage!  We were able to discontinue her physical
therapy and occupational therapy last year because of her progress.
She continues to have speech therapy to work on sentence formation.
We have always pushed Abby to do her best and never give up.  We
NEVER expected less of Abby because of the syndrome.  There were
many times she would be tired and want to give up in therapy or
working in school, but we would encourage her to continue and it has
paid off.  She has overcome many things in her eight years.  Only
God knows what the future holds for Abby and the rest of your
children.  When we saw Dr. Weaver in December he ask us to
participate in a gene mapping study so they could possibly identify
the gene to Weaver syndrome.  This is the second study we have
participated in, the fist was when Abby was four.  Dr. Weaver has a
goal to chart information on Weaver syndrome this coming year and
make it available for all families with Weaver syndrome.  It would
be helpful for everyone to let him know how your child is doing and
some of the history of your child.  He needs updated information to
make this happen.  It is going to require everyone to get that to
him.  He believes there are about 50 families now who have
documented cases with Weaver.  I would love to see this information
current so we all can be informed.  You can email him at:
dweaver@...   May God bless you and your family with good
health and love this new year.
Greta Holmes
Bowling Green, Kentucky

--- In WSSA@yahoogroups.com, "ahooburg79" <ahooburg79@...> wrote:
>
> Happy New Year everyone. I hope this year is better for all our
> little
> ones. We have been very busy with all the holidays, so I have not
> been
> on for awhile, I am exited to see the new members and posts!!
> I am joyfull to report to you all the Devon is doing great! He
> turned
> 5 in late October, is back in pre-school part time and making much
> progress. Behavior is getting a bit better as his communication
> skills
> improve, something I am sure some of you are looking forward to.
In
> the health area he is still improving! He has gotten a few ear and
> sinus infections, but reacted great to the antibiotics--almost a
> first!
> His alergies are not gone, but I do see them letting up a little.
> He is still above the 95th percintile for both height and weight,
> but
> he seams to be getting very (lean?), thin as I see it. Maybe I am
> used
> to seeing him a tad on the heavy side, so this change worries me a
> little. He is eating all his calories and water by mouth and has
for
> 9-
> 10 months. He hasn't lost weight, but grows about 1 inch or so
every
> 3
> months. He is a picky eater, who mostly likes peanut butter and
> butter
> sandwiches.
> Potty training....Any suggestions or about what ages that they
> started
> showing controle?
> I hope everyone is doing well, I will keep all these little ones
and
> their families in my prayers. I now have the internet at home so I
> hope to chat to some of you soon!!!
> April from Washington State
> Mother of Devon, now 5
>

Happy New Year everyone. I hope this year is better for all our
little
ones. We have been very busy with all the holidays, so I have not
been
on for awhile, I am exited to see the new members and posts!!
I am joyfull to report to you all the Devon is doing great! He
turned
5 in late October, is back in pre-school part time and making much
progress. Behavior is getting a bit better as his communication
skills
improve, something I am sure some of you are looking forward to. In
the health area he is still improving! He has gotten a few ear and
sinus infections, but reacted great to the antibiotics--almost a
first!
His alergies are not gone, but I do see them letting up a little.
He is still above the 95th percintile for both height and weight,
but
he seams to be getting very (lean?), thin as I see it. Maybe I am
used
to seeing him a tad on the heavy side, so this change worries me a
little. He is eating all his calories and water by mouth and has for
9-
10 months. He hasn't lost weight, but grows about 1 inch or so every
3
months. He is a picky eater, who mostly likes peanut butter and
butter
sandwiches.
Potty training....Any suggestions or about what ages that they
started
showing controle?
I hope everyone is doing well, I will keep all these little ones and
their families in my prayers. I now have the internet at home so I
hope to chat to some of you soon!!!
April from Washington State
Mother of Devon, now 5

I'm new to post, but have been reading the posts for the past few
months.  My daughter Maura was diagnosed with Weavers at 15 months,
she is now 22 months old (today), 39 pounds and 39 inches long (I
know I keep saying she's square :-)

She was born (we thought) healthy 9 lbs 2 ounces and 21 inches long,
(I'll leave a lot of detail out) had heart surgery at 13 days old to
repair a narrowing in her aorta, was on a feeding pump for 8 weeks
due to failure to thrive (although she continued to get longer) has
respiratory issues (floppy airways mostly due to her small chin),
umbilical hernia, uerator(sp?) reflux (some of her urine goes back
into her kidneys when her bladder empties), she didn't smile until 3
months of age (now she doesn't stop smiling :-), and at 6 months old
was diagnosed as being very behind developmentally through PT (and
has been getting PT and Play therapy ever since-also added speech and
occupational therapy over the past 8 months), she was being evaluated
by a neurologist due to lack of movement and high muscle tone on her
left side, when she developed black eyes (8 months old), two weeks
later was diagnosed with neuroblastoma (cancer of the central nervous
system)...she is now in full remission after six months of
treatments...

She is the sweetest baby...and has been sitting up for 8 months now
and skoots everywhere she wants to go, with the help of a customized
walker she is taking some steps...I don't know that she'll ever crawl
in the normal sense due to her issues with her left side, but she
definitely gets to where she wants to go (and fast).  We've been so
impressed with her development and how hard she works.  For any
parents experiencing issues in movement or are having difficulty with
kids not wanting to do something, go to the water...since Maura
started aquatic therapy in PT (and we've since joined a gym with a
pool to get her in the other days of the week)...she has come a long
way...

Where (one of) my problem often lies is that she is behind requiring
us to use toys of a much younger level when her size dictates the
need for much larger toys...  I've tried to work with toy companies
in developing lines of toys for kids, and I get canned responses
(kindly blowing me off) I don't think they realize how big the market
is for kids with challenges...

Another problem is discipline, although not much is required (she
really is a good child) she bites and does some other things that
require telling her no...she laughs when we yell (not because she's
being bad, just because she really thinks it's funny), and I hate to
even smack her hand because I don't know that she understands what
she did...I don't want to not discipline because I don't think she
understands, but I don't want to over discipline if she's not getting
anything from it just curious if anyone has any suggestions to help
us teach her.

I'm really looking forward to my dialogue with the group because
although I have friends that have children with challenges, I
don't "know" anyone else with a Weavers baby...

She is such an awesome child and is the light of our lives...she is
pleasant and loved by everyone...we're truly blessed, we just want to
make sure that we're giving her everything and doing everything we
can!

Hope everyone has a great day.

Kate, Kevin and Maura

Hello to all!  We are in Canada (Niagara Falls area) with our daughter Rachel -
another
Weaver baby.  She is now 6 months, and we would love to correspond regularly
with
other Weaver parents, particularly of Weaver girls.  I have also corresponded
with Dr.
Weaver via email.

Rachel is a bit of a mystery in that she is not growing quickly at all.  A
significant
characteristic of this syndrome is the overgrowth (or so we thought), so the
very slow
growth (50th percentile) is a mystery to us.  Anyone else have that?

Yes, we have the scoliosis and other characteristics found on the printouts of
Weavers...  As for how pronounced, it hasn't been dealt with because the docs
and
therapists are working on her feet and sucking/swallowing.

Let's keep in touch.

Sara (and husband Ralph and daughters Emily, Sophia, and Rachel)

--- In WSSA@yahoogroups.com, Mary Hearing <momofalex031505@...> wrote:
>
> I almost missed your post because there are so few posts on this
site!  My son, alex, is 19 months old and was "diagnosed" at about 15
months.  he seems to have a very mild case we have been told.  He was
pretty significantly developmentally delayed, but we got him into
therapies early, and he has caught up with all the fine and gross
motor skills.  he is still very behind in speech.  he does not have
any words yet.  He does do pretty well with sign language, though.
we live in Portland, OR, and from what I understand, there are not
many people out there diagnosed with Weaver syndrome which makes it
kind of tough because I am eager to know what is in store for alex.
I have emailed dr weaver a few times and he has been pretty helpful.
His email is dweaver@... Good luck with finding answers that you need!
>
>   Mary
>
> xselinaregan <xselinaregan@...> wrote:
>           Hi everyone
> my name is selina and i have a 4 year old son called charlie who
has
> weavers syndrome.We live in Ireland and we believe charlie is one
of
> two children in ireland who has weavers .
> I am so happy to have found this site and yet a little nervous!!
> I am so looking forward to sharing with you all
> Charlie is a fantastic little boy who is doing really well .he is
in
> mainsteam school with a special assistant,everyday he never ceases
to
> amaze us .
> do any other children have scholosis???
> any info on how to contact Dr .weaver.
> i would relly love to hear from any other parents of similiar aged
> little boys.
> Really looking forward to hearing from you
> hope all the children are well
> best wishes selina
>
>
>
>
>
>  Hi my name is Danielle and I am the mother of a 4 yr old with
Weaver's in ga .   My son is now 4 ft tall and is presenting scolosis
it is a type that humps there back in a curve (like a hump).  My pt
tells me posture is the key to helping with it. His father has a
possible diagnoises also and he is 32 years old and stands 7 ft
tall.  But I have been told by Dr. Weaver that my son has a mild
form .  When we went to seen Dr. Weaver in May of 2005 he was very
informative and helpful he took 4 -5 hours with us and answereed
anything we needed to know.  He was very very nice to us.  Anyone
that can go I suggest going or at least emailing him. Best wishes
Danielle Auvenshine
> ---------------------------------
> Sponsored Link
>
> Try Netflix today! With plans starting at only $5.99 a month what
are you waiting for?
>

Hi everyone
my name is selina and i have a 4 year old son called charlie who has
weavers syndrome.We live in Ireland and we believe charlie is one of
two children in ireland who has weavers .
I am so happy to have found this site and yet a little nervous!!
I am so looking forward to sharing with you all
Charlie is a fantastic little boy who is doing really well .he is in
mainsteam school with a special assistant,everyday he never ceases to
amaze us .
do any other children have scholosis???
any info on how to contact Dr .weaver.
i would relly love to hear from any other parents of similiar aged
little boys.
Really looking forward to hearing from you
hope all the children are well
best wishes selina

Hi everyone
my name is selina and i have a 4 year old son called charlie who has
weavers syndrome.We live in Ireland and we believe charlie is one of
two children in ireland who has weavers .
I am so happy to have found this site and yet a little nervous!!
I am so looking forward to sharing with you all
Charlie is a fantastic little boy who is doing really well .he is in
mainsteam school with a special assistant,everyday he never ceases to
amaze us .
do any other children have scholosis???
any info on how to contact Dr .weaver.
i would relly love to hear from any other parents of similiar aged
little boys.
Really looking forward to hearing from you
hope all the children are well
best wishes selina

This message was initially a reply to Dora (Emma's
mum).  I was excited to see a mom of a Weaver's girl.
I've been corresponding with Dr. Weaver over email,
and I asked about reaching other parents of Weaver
girls.  Our Rachel Joy is now four months.  She is in
the 75th percentile for length and weight and slightly
more (90th) for head size.  She doesn't show an
excessive appetite, but we also control her intake
with food because she has a g-tube.  We can't help but
wonder about when she will make sounds, feed without a
g-tube, and develop some of the skills we see in our
other girls.  In the meantime, we are receiving great
care with a respite nurse 16 hours a week, and there
are some good specialists involved with her care - but
none have worked with Weaver Syndrome.  We now have
meds for reflex and poor bowel motility, issues that I
wrote about earlier, and we couldn't be more pleased
with her progress in overcoming constipation and
reflux!

How does it go for you (all of you?) with meeting
other parents in the same situation?  So far this
group seems to be the only contact we have with other
Weaver families.  I would love to hear from another
Canadian family, but maybe that just won't work right
now.  We hope to make a trip to Minneapolis at
Christmas for a wedding - anyone nearby? : )

Are there things you purchased for your kids that
helped with the transition from infancy to toddler to
preschool -in terms of dealing with carrying a heavy
child around or encouraging motor skills?  Anybody
find a great toy or something helpful (like signing)
that made a difference?  No, I am not looking for the
magic formula, but I was curious about specific things
or ideas that made a difference for you.

Finally here - I need to finalize my topic for my
thesis (Master's of Educatin program).... Should I
work with a topic related to Weaver's Syndrome?  : )

All the best to you all!

Sara Pot - Canadian mom with Rachel Joy, 4 months
(and Rachel's loving Dad and two big sisters)

__________________________________________________
Do You Yahoo!?
Tired of spam?  Yahoo! Mail has the best spam protection around
http://mail.yahoo.com

I read with interest the posts from each of you.  I've been
there.... My son, Kendall, is now 26 years old and is doing so very
well.  He has full time work as a wheelchair agent at our local
airport, volunteers as a Guide at a local hospital, plays all sorts
of sports for Special Olympics, and is active in a singles group at
Church!
Kendall had PT, OT and Speech Therapies for years and now he
communicates full.  We were told that he would likely not have
enough balance to walk unaided - but he rides his bike and/or the
bus to get anywhere in town.  We were told he would not speak, and
we worked for 18 months to get a "G" sound out of him.  (We also
taught him enough sign during this time to enable him to communicate
his needs.)  We were told he wouldn't have enough dexterity to
communicate in writing, but he's our best "message taker" at home
and communicates well with callers.  Hang in there!
I've also noticed that there are a couple of members to this group
who live in England.  My husband and I are going on a trip to the UK
for two weeks beginning next Tuesday.  It is a first, and likely the
only, visit overseas.  I'd be interested in knowing if any of you in
England might be in the areas we will be traveling.  You could
contact me directly at "acromar@..." if you would like me to
see if we could get together!
You are all in my thoughts as you struggle in the hard times....
Know that there are great times ahead!
Sincerely,
Alene Cromar
Colorado Springs

--- In WSSA@yahoogroups.com, "dora7417" <dora.alaminos@...> wrote:
>
> Hi to you all again. It has been some time since I have been able
to
> spend a moment reading and catching up. We have just come back
from
> a months holiday at my parents home in Spain and the rest has done
> us all good. Now its back to the routine of appointments and
> specialists etc etc. I'll admit to feeling a little sick at
having
> to come back to the real world!
>
> Emma is two now but is still not walking and weighs over 32lbs..
Our
> Physio talked about stepping up the exercises after the summer but
> she also stressed that there are no guarantees that Emma will
walk..
> I cannot accept this. I remember reading that there was another
> little boy .. Brandon I believe who was a late walker.. Is he
> walking now?
>
> Emma is still not vocalizing, the occasional humming and excited
> noises is all we have at the moment.. Were any of your children
> really late at vocalizing?
>
> With respect to a question raised by another mother regarding the
> chances of having another child with weavers, a lot of us have
other
> children that are fine.. so surely the chances of having a second
> child with weavers must be slim! I was surprised to see that DR
> Weaver had suggested the chances of being as high as 50%. I too
> want to add to my family so that Emma has a good support system in
> place and I was waiting for Emma to start walking and be potty
> trained... oh and to win the lottery!
>
> Hope you have all managed to have a decent brake and that all the
> kids are doing okay.
>
> best wishes
> Dora
>HI DORA I JUST THOUGHT I WOULD EMAIL YOU . I HAVE JUST JOINED THE
GROUP IN THE LAST COUPLE OF DAYS. HOW IS EMMA NOW? SO MUCH OF WHAT
SAID IS A COMPLETE REPLICA OF WHAT MY SON LIAM WENT THROUGH HE 7 NOW
AND HE IS A VERY HEADSTRONG BOY. I HAVEW CHOSEN NOT TO HAVE A SECOND
CHILD BECAUSE AS WELL AS WEAVERS LIAM WAS AKLSO BORN WUTH RARE SKULL
DISORDER. I HAVE ENCLOSED A PICTURE OF LIAM

--- In WSSA@yahoogroups.com, "dora7417" <dora.alaminos@...> wrote:
>
> Hi to you all again. It has been some time since I have been able
to
> spend a moment reading and catching up.  We have just come back
from
> a months holiday at my parents home in Spain and the rest has done
> us all good.  Now its back to the routine of appointments and
> specialists etc etc.  I'll admit to feeling a little sick at
having
> to come back to the real world!
>
> Emma is two now but is still not walking and weighs over 32lbs..
Our
> Physio talked about stepping up the exercises after the summer but
> she also stressed that there are no guarantees that Emma will
walk..
> I cannot accept this.  I remember reading that there was another
> little boy .. Brandon I believe who was a late walker.. Is he
> walking now?
>
> Emma is still not vocalizing, the occasional humming and excited
> noises is all we have at the moment.. Were any of your children
> really late at vocalizing?
>
> With respect to a question raised by another mother regarding the
> chances of having another child with weavers, a lot of us have
other
> children that are fine.. so surely the chances of having a second
> child with weavers must be slim!  I was surprised to see that DR
> Weaver had suggested the chances of being as high as 50%.  I too
> want to add to my family so that Emma has a good support system in
> place and I was waiting for Emma to start walking and be potty
> trained... oh and to win the lottery!
>
> Hope you have all managed to have a decent brake and that all the
> kids are doing okay.
>
> best wishes
> Dora
>HI DORA I JUST THOUGHT I WOULD EMAIL YOU . I HAVE JUST JOINED THE
GROUP IN THE LAST COUPLE OF DAYS. HOW IS EMMA NOW? SO MUCH OF WHAT
SAID IS A COMPLETE REPLICA OF WHAT MY SON LIAM WENT THROUGH HE 7 NOW
AND HE IS A VERY HEADSTRONG BOY. I HAVEW CHOSEN NOT TO HAVE A SECOND
CHILD BECAUSE AS WELL AS WEAVERS LIAM WAS AKLSO BORN WUTH RARE SKULL
DISORDER. I HAVE ENCLOSED A PICTURE OF LIAM

Does anyone have experience with their children developing reflux after having a g-
tube placed? It's been about 4 weeks since her g-tube was placed, and now we are
having trouble with Rachel bringing up her feeds - some or all. Any advice?

__________________________________________________
Do You Yahoo!?
Tired of spam? Yahoo! Mail has the best spam protection around
http://mail.yahoo.com

Does anyone have experience with their children developing reflux after having a g-
tube placed? It's been about 4 weeks since her g-tube was placed, and now we are
having trouble with Rachel bringing up her feeds - some or all. Any advice?

Does anyone have experience with their children developing reflux after having a g-
tube placed? It's been about 4 weeks since her g-tube was placed, and now we are
having trouble with Rachel bringing up her feeds - some or all. Any advice?

Does anyone have experience with their children developing reflux after having a
g-
tube placed?  It's been about 4 weeks since her g-tube was placed, and now we
are
having trouble with Rachel bringing up her feeds - some or all.  Any advice?

hi. My husband and I are parents of a beautiful baby girl - the youngest of three girls
- who has been diagnosed with Weaver's. She is now 8 weeks old; the diagnosis was
given shortly after birth. I read through the postings of this site and read of only one
or two girls. (My sister has also joined the group recently, so the posting about the
niece is actually our daughter.) Is Weaver's more common in boys? We are adjusting
to life at home. Our Rachel feeds with a g-tube, and we are optimistic she will
develop the feeding skills in time. She takes soy formula - any other babies on soy?
It's been better on her system than EBM - crazy. We are not sure of the future... We
take things one day at a time. We see Rachel's diagnosis as simply that - a diagnosis
- but not a prognosis. The future is not certain; maybe that is aggravating at times,
but it can also be relieving. We are thankful there is some support for Weaver's
families, but it does seem to involve just a small group across the globe! Hope all is
well for everyone who is a part of this group and we look forward to corresponding
with other families.

Any other Canadian babies?

Is it worth meeting Dr. Weaver? We were discussing that the other night.

sara

hi. My husband and I are parents of a beautiful baby girl - the youngest of three girls
- who has been diagnosed with Weaver's. She is now 8 weeks old; the diagnosis was
given shortly after birth. I read through the postings of this site and read of only one
or two girls. (My sister has also joined the group recently, so the posting about the
niece is actually our daughter.) Is Weaver's more common in boys? We are adjusting
to life at home. Our Rachel feeds with a g-tube, and we are optimistic she will
develop the feeding skills in time. She takes soy formula - any other babies on soy?
It's been better on her system than EBM - crazy. We are not sure of the future... We
take things one day at a time. We see Rachel's diagnosis as simply that - a diagnosis
- but not a prognosis. The future is not certain; maybe that is aggravating at times,
but it can also be relieving. We are thankful there is some support for Weaver's
families, but it does seem to involve just a small group across the globe! Hope all is
well for everyone who is a part of this group and we look forward to corresponding
with other families.

Any other Canadian babies?

Is it worth meeting Dr. Weaver? We were discussing that the other night.

sara

__________________________________________________
Do You Yahoo!?
Tired of spam? Yahoo! Mail has the best spam protection around
http://mail.yahoo.com

hi.  My husband and I are parents of a beautiful baby girl - the youngest of
three girls
- who has been diagnosed with Weaver's.  She is now 8 weeks old; the diagnosis
was
given shortly after birth.   I read through the postings of this site and read
of only one
or two girls. (My sister has also joined the group recently, so the posting
about the
niece is actually our daughter.)  Is Weaver's more common in boys?  We are
adjusting
to life at home.  Our Rachel feeds with a g-tube, and we are optimistic she will
develop the feeding skills in time.  She takes soy formula - any other babies on
soy?
It's been better on her system than EBM - crazy.  We are not sure of the
future...  We
take things one day at a time.  We see Rachel's diagnosis as simply that - a
diagnosis
- but not a prognosis. The future is not certain; maybe that is aggravating at
times,
but it can also be relieving.   We are thankful there is some support for
Weaver's
families, but it does seem to involve just a small group across the globe!  
Hope all is
well for everyone who is a part of this group and we look forward to
corresponding
with other families.

Any other Canadian babies?

Is it worth meeting Dr. Weaver?  We were discussing that the other night.

sara

Hello everyone. I am so sorry I have not gotten back to you,
especially you Mary! Everytime I log on here, it seems that I am
having to create a new account, very frustrating!! My son is now a
little over 4 1/2 yrs old. He is doing very well considering his
rough(to say the least) fisrt year or two. He is large for his age
still, and has many developmental delays and a few other health
concerns and on going problems. I would love to chat with anyone who
would like to talk. I remember how exited I was when I found this
site. Just to know that we(my family) was not alone and to know that
other families where going through very simular situations!!! Devon
is affected more than most other weaver syndrome kids, and possibly
by another syndrome or two. We see a two handfulls of doctors on
regular basis. Life has changes in a way that words are unable to
describe. I am sure a few of you know what I mean. I am a little
nervous putting my home phone number on this page, but I am going
to. We live in N.E. Washington State, almost to the Canadian border
(about 70 miles away). Where are the rest of ya? I know of a weaver
syndrome (adult now) who lives in this state, only on the other
side. And of one in Colorado(adult now).
My home number is (509)722-3364 and I only speak English. I am
usually home if I am not making the 160 mile round trip to Spokane
that we make twice a week to see Dr's and theripist. I would
absolutely love to talk with you and share concerns stories, maybe
tears and laughs as well. How I look at it is.. From the last time I
was told there are only 38 confirmed Weaver Syndrome cases in the
WORLD!! The doctors do not seem to know a bunch about what to expect
and how things will go, so lets write our own book. What I mean is
to talk, compare and support eachother in ways only another Weaver
syndrome family can do. I look forward to hearing from someone, and
I can call you and maybe do a conference call so two or tree of us
moms can talk at the same time.
Waiting for you...
April, mother of Devon

Hi, just wondering if there is anyone out there who we could talk with--
my baby niece (one month old) was diagnosed with Weaver's, and we don't
know ANYONE with this condition. Could somebody reply so we could
maybe talk and share stories?

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Hi, just wondering if there is anyone out there who we could talk with--
my baby niece (one month old) was diagnosed with Weaver's, and we don't
know ANYONE with this condition. Could somebody reply so we could
maybe talk and share stories?

__________________________________________________
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http://mail.yahoo.com

Hi, just wondering if there is anyone out there who we could talk with--
my baby niece (one month old) was diagnosed with Weaver's, and we don't
know ANYONE with this condition.  Could somebody reply so we could
maybe talk and share stories?

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Hello,

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Hi everyone, its been awhile since I've been on here. So long in
fact that I had to re join, due to a new computer and a poor
memory. :)

Devon has been doing fairly well. School is once again comming to an
end for the school year. Devon has one more year of pre-school
before kindergarden. He has developed so much since I was last on
here. The area he has grown the most in is his comunication. With
that progress, his behavior has gotten much better. He is still
emotionally up and down. He is clumsy as always. Lots of balance
issues. I took him in for his first emergency room visit for an
injury.(actually twice in the same week!!) He slammed his thumb in
the front door and pulled his nail right off. Two days later, he
head butted the freezer...gashing his forhead open. I really hope
this  summer doesnt continue this way.

How are all the little ones doing? Has there been any new info on
weavers? How old is the oldest weaver syndrome person/kid in this
group? I would really like to ask some questions. I just cannot help
but wonder what his future holds. How high functioning are these
kids suppost to get?

I am trying to get a recent picture of Devon put on here. His
geneticist(spelling?)said that these kids do look alike. She
explained it kinda like down syndrome. All the kids have strong
simularities, yet carry on the family resemblence as well. I would
like to look at a few other kids to see if the simularities are
stong, and what they are(besides being large-or is that the
strongest simularity?),kinda how down syndrome kids have the
strongly simualar faces, (eyes, nose, forhead, mouth, etc). Just
another wonder of mine.

I hope to hear from all you soon, and hope this reaches you all in
good health and great spirits! Give all the little ones extra loves
today!

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Hi everyone, its been awhile since I've been on here. So long in
fact that I had to re join, due to a new computer and a poor
memory. :)

Devon has been doing fairly well. School is once again comming to an
end for the school year. Devon has one more year of pre-school
before kindergarden. He has developed so much since I was last on
here. The area he has grown the most in is his comunication. With
that progress, his behavior has gotten much better. He is still
emotionally up and down. He is clumsy as always. Lots of balance
issues. I took him in for his first emergency room visit for an
injury.(actually twice in the same week!!) He slammed his thumb in
the front door and pulled his nail right off. Two days later, he
head butted the freezer...gashing his forhead open. I really hope
this  summer doesnt continue this way.

How are all the little ones doing? Has there been any new info on
weavers? How old is the oldest weaver syndrome person/kid in this
group? I would really like to ask some questions. I just cannot help
but wonder what his future holds. How high functioning are these
kids suppost to get?

I am trying to get a recent picture of Devon put on here. His
geneticist(spelling?)said that these kids do look alike. She
explained it kinda like down syndrome. All the kids have strong
simularities, yet carry on the family resemblence as well. I would
like to look at a few other kids to see if the simularities are
stong, and what they are(besides being large-or is that the
strongest simularity?),kinda how down syndrome kids have the
strongly simualar faces, (eyes, nose, forhead, mouth, etc). Just
another wonder of mine.

I hope to hear from all you soon, and hope this reaches you all in
good health and great spirits! Give all the little ones extra loves
today!

--- In WSSA@yahoogroups.com, "Lee Tilson" <lee.tilson@...> wrote:
>
> I am working with a child about whom it was suggested that he might
> have Weavers syndrome.
>
> I know nothing about it.
>
> Can anyone here direct me to the leading experts on the subject? Is
> there some authoritative way to find out if the child has Weavers?
>
> Thanks
>
Hi, I can't answer your question, but wanted to throw in another
possibility.  Could it be that the child has Sotos-Like syndrome?  The
manifestations are very similar.  I have an adult son who was
diagnosed with Sotos-Like (maybe!!!) and if you want to chat about the
markers of the child in question, I might be of some help.
Liliane

I am working with a child about whom it was suggested that he might
have Weavers syndrome.

I know nothing about it.

Can anyone here direct me to the leading experts on the subject? Is
there some authoritative way to find out if the child has Weavers?

Thanks