Hello everyone,

I sent this message to everyone's email directly (as long as the member
directory had a valid email address) in hopes of encouraging your
response.  Just wanted you to know to expect the message, so you
wouldn't think you got spammed! :)

************************************************************************\
**********************************

Please CHECK OUT Erin Kewer's latest resource for the JS community:
http://jacobsenssyndromeawareness.com/ .  She has created a wonderful
blog site dedicated to all things about Jacobsen's Syndrome and 11q
Disorders.

One really neat feature on the site is the world map that pinpoints all
our JS/11q families.  You'll find the Frappr GuestMap on the bottom,
right-hand corner of the home page of the blog.  By clicking on the map,
you can create a Frappr account and enter your own info.

To further help us see where we all are, Erin is compiling a list of
locations of kids with JS.  Even if you complete the Frappr GuestMap
feature, please provide the following information to Erin, and she'll
include you on the Locations page of the blog
(http://jacobsenssyndromeawareness.com/?page_id=64 ).  You never
know--there might be another family in your area and you can connect!
Email Erin (erinkewer@...) with

      Your Name (can be just first name)
      Child(ren)'s first name(s)
      State/Country
      Age of child


We'd also love for you to send pictures for us to post and to complete
the survey (click on the JS Survey tab on the menu bar:
http://jacobsenssyndromeawareness.com/?page_id=3  for the short list of
questions)! You can contact Erin via this group or at
erinkewer@....

Thank you!
Heather Wainwright (Erin's helper :))
mother to Joshua (typical), Nate (11q24.3)

I would need a size 7, and am in Kentucky.
Any information you could provide would be fantastic!
Thanks!

--- In 11q_disorders@yahoogroups.com, "Peggy St.Clair" <thesqaw@...> wrote:
>
> If  you odn't care where are you located and I will research and see what I
can find.What size diaper do you need Peggy
>
> --- On Wed, 11/18/09, Amity <amityylynn@...> wrote:
>
>
> From: Amity <amityylynn@...>
> Subject: Re: [11q_disorders] Re: weight
> To: 11q_disorders@yahoogroups.com
> Date: Wednesday, November 18, 2009, 8:08 AM
>
>
>  
>
>
>
>
>
> I have tried a couple of local pharmacies, and none of them have the size 7 I
need for her.  Right now i'm paying $42 for a case online, but don't know what
else to do.  (Except work really hard on the potty training!)  :)
>
>
>
>
>
> From: Ms Reckless <msreckless_1@ yahoo.com>
> To: 11q_disorders@ yahoogroups. com
> Sent: Tue, November 17, 2009 9:19:59 PM
> Subject: Re: [11q_disorders] Re: weight
>
>  
>
>
>
>
>
>
> Amity,
> Have you tried your local pharmacy for the diapers?  I buy in bulk from my
pharmacy, and it is cheaper. Although  Nathan is only in a size 3-4.
>
>
>
>
>   If you learn from it....it is not a mistake.
>
> --- On Tue, 11/17/09, amityylynn <amityylynn@yahoo. com> wrote:
>
>
> From: amityylynn <amityylynn@yahoo. com>
> Subject: [11q_disorders] Re: weight
> To: 11q_disorders@ yahoogroups. com
> Date: Tuesday, November 17, 2009, 11:52 AM
>
>
>  
>
> My daughter, Kaylee is 11 yrs old, and still only weighs about 45 lbs. She is
very small, no one can believe she is 11. She has no problem eating, she is not
picky at all, and will eat just about anything put in front of her. She just
doesn't gain weight. But she is very healthy.
> She does still use a sippy cup. Hasn't quite mastered the straw yet, and
doesn't like it in her mouth. We are working on it with her therapists and
hopefully will get away from the sippy cup.
> She is still not potty trained. She will tell me when she goes to the bathroom
in her diaper, but has only peed on the potty a couple of times. We are to order
her diapers online (size 7) and they are very expensive, so potty training is
also at the top of our list to get it done.
> I work for a large construction machinery manufacturer as a Buyer/Planner. I
do get 2 weeks vacation, but also am a salaried employee and can take extra time
off for sickness and still get paid for it. I have been extremely lucky that my
employer understands my situation and will work with me. When Kaylee gets sick,
she usually gets really sick and means a week off work automatically. A couple
of weeks ago she had to have 10 baby teeth pulled out because they hadn't fallen
out yet for her permanent teeth to come in. Because of the platelet issue, she
had lots of bleeding, and I was off work for a week with her.
> Anything you want to ask, please do!!
> Amity
>
> --- In 11q_disorders@ yahoogroups. com, "Peggy St.Clair" <thesqaw@ > wrote:
> >
> > Let me tell you Grce was so small for so many years and back int he 70s-80s
they didn't think of giving a growth hormone.  But when she hit adolescance
she grew to normal size. She now has a weight problem.Mainly because she can't
be active like she used to. We did fortify her  meals to some exstint with
carnation instant breakfast. Egss and other big calorie things added to her
diet. Alot of it can be added to liquid mixtures  and does help.The big thing
if they are getting enough  don't add.You don't want a small over weight
child as it makes it harder for them to get around.  Grace is now 5ft 6
inches and that is fine for us. She is 34 yrs old.
> > Lots of decsions to be made. Chewing was a problem for her and I used a
chopper or a blender often to make her food where she could eat it.
> > Good luck Peggy
> >
> >
> > --- On Sun, 11/15/09, Erin <erinkewer@ ..> wrote:
> >
> >
> > From: Erin <erinkewer@ ..>
> > Subject: Re: [11q_disorders] weight
> > To: 11q_disorders@ yahoogroups. com
> > Date: Sunday, November 15, 2009, 11:02 AM
> >
> >
> >  
> >
> >
> >
> >
> > Right now I do daycare at home. Olivia will be 4 next month so her appts are
as much as they used to be. She goes once a year on a few of her docs
> >
> >
> >
> >
> > From: Kristen Haley
> > Sent: Saturday, November 14, 2009 9:15 PM
> > To: 11q_disorders@ yahoogroups. com
> > Subject: [11q_disorders] weight
> >
> >  
> >
> > Hi everyone,
> > We've already had our first visit to the endocrinologist for Ayah, now
> > just a few weeks past the 1 year mark. Her height and head
> > circumference are still following a curve, but she's been hovering at
> > 16 lbs for a while now. Thankfully, the Dr said that he's not
> > concerned about her from an endocrinological standpoint, and referred
> > us to a nutritionist. The nutritionist recommended switching to
> > Pediasure from her formula for more calories per ounce, but I'm
> > nervous about the sugar content (18g per 8oz). In addition, she will
> > NOT open her mouth if she's teething and will go a week or more
> > without any solids whatsoever, during this time. Between this and the
> > sick animals at the emergency animal hospital I work at, I'm worried
> > that I may give her a complex with how excited I get when anyone eats.
> > I'm sure we're not the only ones facing feeding issues. What higher
> > calorie diets have others put their babies on, if any?
> >
> > Also, I was wondering what you do for a living, as parents and
> > caretakers of 11q kids who have so many doctor and specialist
> > appointments. Right now, I only work on weekends and my husband works
> > during the week so that one of us can be with her all the time, with
> > the exception of the one day per week that I have class. We're both
> > looking for new jobs, and, unless I manage to find something part
> > time, or maybe 3rd shift (and give up sleep), I don't know how all the
> > scheduling will work.
> >
> > Thanks!
> > <3,
> > Kristen
> >
>

Amity,
I know the feeling!  Neither of my boys are potty trained and they are 8 and 10.
Luckily they still fit into size 6, but I have looked around and the only option
I can find after this is to pay the high prices online for the size 7.  I really
wish that I could get them potty trained, but neither of them even knows when
they are wet or dirty.  For night time, the size 6 diapers aren't enough so we
have had to start putting men's incontinence pads into the diapers and those are
not cheap either.  I have tried getting medicaid or my insurance to pay for the
diapers, but in our state, they are not covered under the deeming waiver
medicaid and my primary insurance won't pay either.  We do have another waiver
program that will pay for them, but the waiting list to get on the waiver is
about 15 years long!!  Most people aren't getting approved for it until they are
age 21 and out of the school system.  We have been on the waiting list for 5
years now!  I dread having to pay the higher prices for the bigger diapers
because as it is now, I go through a case a week with both boys.

--- In 11q_disorders@yahoogroups.com, Amity <amityylynn@...> wrote:
>
> I have tried a couple of local pharmacies, and none of them have the size 7 I
need for her.  Right now i'm paying $42 for a case online, but don't know what
else to do.  (Except work really hard on the potty training!)  :)
>
>
>
>
> ________________________________
> From: Ms Reckless <msreckless_1@...>
> To: 11q_disorders@yahoogroups.com
> Sent: Tue, November 17, 2009 9:19:59 PM
> Subject: Re: [11q_disorders] Re: weight
>
>  
> Amity,
> Have you tried your local pharmacy for the diapers?  I buy in bulk from my
pharmacy, and it is cheaper. Although  Nathan is only in a size 3-4.
>
>
>   If you learn from it....it is not a mistake.
>
> --- On Tue, 11/17/09, amityylynn <amityylynn@yahoo. com> wrote:
>
>
> >From: amityylynn <amityylynn@yahoo. com>
> >Subject: [11q_disorders] Re: weight
> >To: 11q_disorders@ yahoogroups. com
> >Date: Tuesday, November 17, 2009, 11:52 AM
> >
> >
> > 
> >My daughter, Kaylee is 11 yrs old, and still only weighs about 45 lbs. She is
very small, no one can believe she is 11. She has no problem eating, she is not
picky at all, and will eat just about anything put in front of her. She just
doesn't gain weight. But she is very healthy.
> >She does still use a sippy cup. Hasn't quite mastered the straw yet, and
doesn't like it in her mouth. We are working on it with her therapists and
hopefully will get away from the sippy cup.
> >She is still not potty trained. She will tell me when she goes to the
bathroom in her diaper, but has only peed on the potty a couple of times. We are
to order her diapers online (size 7) and they are very expensive, so potty
training is also at the top of our list to get it done.
> >I work for a large construction machinery manufacturer as a Buyer/Planner. I
do get 2 weeks vacation, but also am a salaried employee and can take extra time
off for sickness and still get paid for it. I have been extremely lucky that my
employer understands my situation and will work with me. When Kaylee gets sick,
she usually gets really sick and means a week off work automatically. A couple
of weeks ago she had to have 10 baby teeth pulled out because they hadn't fallen
out yet for her permanent teeth to come in. Because of the platelet issue, she
had lots of bleeding, and I was off work for a week with her.
> >Anything you want to ask, please do!!
> >Amity
> >
> >--- In 11q_disorders@ yahoogroups. com, "Peggy St.Clair" <thesqaw@ > wrote:
> >>
> >> Let me tell you Grce was so small for so many years and back int he 70s-80s
they didn't think of giving a growth hormone.  But when she hit adolescance
she grew to normal size. She now has a weight problem.Mainly because she can't
be active like she used to. We did fortify her  meals to some exstint with
carnation instant breakfast. Egss and other big calorie things added to her
diet. Alot of it can be added to liquid mixtures  and does help.The big thing
if they are getting enough  don't add.You don't want a small over weight
child as it makes it harder for them to get around.  Grace is now 5ft 6
inches and that is fine for us. She is 34 yrs old.
> >> Lots of decsions to be made. Chewing was a problem for her and I used a
chopper or a blender often to make her food where she could eat it.
> >> Good luck Peggy
> >>
> >>
> >> --- On Sun, 11/15/09, Erin <erinkewer@ ..> wrote:
> >>
> >>
> >> From: Erin <erinkewer@ ..>
> >> Subject: Re: [11q_disorders] weight
> >> To: 11q_disorders@ yahoogroups. com
> >> Date: Sunday, November 15, 2009, 11:02 AM
> >>
> >>
> >>  
> >>
> >>
> >>
> >>
> >> Right now I do daycare at home. Olivia will be 4 next month so her appts
are as much as they used to be. She goes once a year on a few of her docs
> >>
> >>
> >>
> >>
> >> From: Kristen Haley
> >> Sent: Saturday, November 14, 2009 9:15 PM
> >> To: 11q_disorders@ yahoogroups. com
> >> Subject: [11q_disorders] weight
> >>
> >>  
> >>
> >> Hi everyone,
> >> We've already had our first visit to the endocrinologist for Ayah, now
> >> just a few weeks past the 1 year mark. Her height and head
> >> circumference are still following a curve, but she's been hovering at
> >> 16 lbs for a while now. Thankfully, the Dr said that he's not
> >> concerned about her from an endocrinological standpoint, and referred
> >> us to a nutritionist. The nutritionist recommended switching to
> >> Pediasure from her formula for more calories per ounce, but I'm
> >> nervous about the sugar content (18g per 8oz). In addition, she will
> >> NOT open her mouth if she's teething and will go a week or more
> >> without any solids whatsoever, during this time. Between this and the
> >> sick animals at the emergency animal hospital I work at, I'm worried
> >> that I may give her a complex with how excited I get when anyone eats.
> >> I'm sure we're not the only ones facing feeding issues. What higher
> >> calorie diets have others put their babies on, if any?
> >>
> >> Also, I was wondering what you do for a living, as parents and
> >> caretakers of 11q kids who have so many doctor and specialist
> >> appointments. Right now, I only work on weekends and my husband works
> >> during the week so that one of us can be with her all the time, with
> >> the exception of the one day per week that I have class. We're both
> >> looking for new jobs, and, unless I manage to find something part
> >> time, or maybe 3rd shift (and give up sleep), I don't know how all the
> >> scheduling will work.
> >>
> >> Thanks!
> >> <3,
> >> Kristen
> >>
> >
> >
>

My daughter, Kaylee is 11 yrs old, and still only weighs about 45 lbs.  She is
very small, no one can believe she is 11. She has no problem eating, she is not
picky at all, and will eat just about anything put in front of her.  She just
doesn't gain weight.  But she is very healthy.
She does still use a sippy cup. Hasn't quite mastered the straw yet, and doesn't
like it in her mouth. We are working on it with her therapists and hopefully
will get away from the sippy cup.
She is still not potty trained.  She will tell me when she goes to the bathroom
in her diaper, but has only peed on the potty a couple of times. We are to order
her diapers online (size 7) and they are very expensive, so potty training is
also at the top of our list to get it done.
I work for a large construction machinery manufacturer as a Buyer/Planner.  I do
get 2 weeks vacation, but also am a salaried employee and can take extra time
off for sickness and still get paid for it.  I have been extremely lucky that my
employer understands my situation and will work with me.  When Kaylee gets sick,
she usually gets really sick and means a week off work automatically.  A couple
of weeks ago she had to have 10 baby teeth pulled out because they hadn't fallen
out yet for her permanent teeth to come in.  Because of the platelet issue, she
had lots of bleeding, and I was off work for a week with her.
Anything you want to ask, please do!!
Amity

--- In 11q_disorders@yahoogroups.com, "Peggy St.Clair" <thesqaw@...> wrote:
>
> Let me tell you Grce was so small for so many years and back int he 70s-80s
they didn't think of giving a growth hormone.  But when she hit adolescance she
grew to normal size. She now has a weight problem.Mainly because she can't be
active like she used to. We did fortify her  meals to some exstint with
carnation instant breakfast. Egss and other big calorie things added to her
diet. Alot of it can be added to liquid mixtures  and does help.The big thing
if they are getting enough  don't add.You don't want a small over weight child
as it makes it harder for them to get around.  Grace is now 5ft 6 inches and
that is fine for us. She is 34 yrs old.
> Lots of decsions to be made. Chewing was a problem for her and I used a
chopper or a blender often to make her food where she could eat it.
> Good luck Peggy
>
>
> --- On Sun, 11/15/09, Erin <erinkewer@...> wrote:
>
>
> From: Erin <erinkewer@...>
> Subject: Re: [11q_disorders] weight
> To: 11q_disorders@yahoogroups.com
> Date: Sunday, November 15, 2009, 11:02 AM
>
>
>  
>
>
>
>
> Right now I do daycare at home. Olivia will be 4 next month so her appts are
as much as they used to be. She goes once a year on a few of her docs
>
>
>
>
> From: Kristen Haley
> Sent: Saturday, November 14, 2009 9:15 PM
> To: 11q_disorders@ yahoogroups. com
> Subject: [11q_disorders] weight
>
>  
>
> Hi everyone,
> We've already had our first visit to the endocrinologist for Ayah, now
> just a few weeks past the 1 year mark. Her height and head
> circumference are still following a curve, but she's been hovering at
> 16 lbs for a while now. Thankfully, the Dr said that he's not
> concerned about her from an endocrinological standpoint, and referred
> us to a nutritionist. The nutritionist recommended switching to
> Pediasure from her formula for more calories per ounce, but I'm
> nervous about the sugar content (18g per 8oz). In addition, she will
> NOT open her mouth if she's teething and will go a week or more
> without any solids whatsoever, during this time. Between this and the
> sick animals at the emergency animal hospital I work at, I'm worried
> that I may give her a complex with how excited I get when anyone eats.
> I'm sure we're not the only ones facing feeding issues. What higher
> calorie diets have others put their babies on, if any?
>
> Also, I was wondering what you do for a living, as parents and
> caretakers of 11q kids who have so many doctor and specialist
> appointments. Right now, I only work on weekends and my husband works
> during the week so that one of us can be with her all the time, with
> the exception of the one day per week that I have class. We're both
> looking for new jobs, and, unless I manage to find something part
> time, or maybe 3rd shift (and give up sleep), I don't know how all the
> scheduling will work.
>
> Thanks!
> <3,
> Kristen
>

The doctor's didn't recommend growth hormone because with my boys' low
developmental level, they won't ever really comprehend that they are smaller
than they should be. They are very stong and can have some major tantrums and if
they get too big, I won't be able to handle them on my own and of course my
husband can't be around to double team in those situations all the time. The
growth hormone also would involve giving them frequent shots (I think the doctor
said daily or close to it) and I really don't want to put them through that if
them being small isn't really a big deal to me or them.  The other major reason
is something I heard discussed at one of the conferences a few years back.  I
remember talking about it and one of the doctors said that the JS kids are more
prone to leukemia and growth hormones could also cause leukemia cells to grow. 
Don't take my word on this because I am just remembering what I heard and it
really solidified my decision.  I think Dr. Grossfeld would probably remember
the discussion and be able to give a better explanation or correct me if I heard
wrong.  If you want to get more information on the growth hormone as it relates
to JS kids, I would suggest emailing Dr. Grossfeld.  If you need his email, let
me know.

--- In 11q_disorders@yahoogroups.com, Gabriela <gabriela.mazariegos@...> wrote:
>
> Hi linzee
>
> Why they don't recomend to give the growth hormone?? I am in the same
situation looking is Daniela need it or what because she it's not growing at all
and has a very high calorie nutrition and the drs thinks thAt she is not
asimilating food so please let me know why you would not give them the hormone
even if they need it
>
> Thanks
>
> Gabriela Mazariegos
> Sent from my iPhone
>
> On Nov 14, 2009, at 9:39 PM, "linzee_carroll" <linzee_carroll@...> wrote:
>
> Hi Kristen,
> My boys have always been very small and it is very common with many 11q kids.
It seems like my boys would have little growth spurts and then stay at one
weight for a long time--in fact I actually remember one of them being at 16 lbs.
for like 6 months. Both of my boys were on pediasure in addition to their
regular diets up until maybe 3 years ago (they are 8 and 10 now). It gave them
the extra calories and additional nutrition, but it never really helped them
grow. It did give me peace of mind though when they had harder times eating. The
doctor finally decided to take them off though because they are healthy weights
for their heights and they eat really well (as long as it's mashed because they
don't chew). Brayden (my 10 year old) has never been on the charts for height
and weight and now he has been stuck at around 40 lbs. for the last 2 years.
Zachary (age 8) occasionally hits the 5th percentile on the charts and he is 40
lbs. also. He seems to be
>  growing more though. I am guessing that Brayden might be missing some growth
hormones, but I haven't worried too much about it because even if he is, I don't
plan to have them give him growth hormone. The pediatrician has suggested that
we go back to the endocrinologist to find out for sure if that is what is going
on, but she also didn't recommend that we give him growth hormone even if he is
missing it.
>
> --- In 11q_disorders@yahoogroups.com, Kristen Haley <kristenhaley@> wrote:
> >
> > Hi everyone,
> > We've already had our first visit to the endocrinologist for Ayah, now
> > just a few weeks past the 1 year mark. Her height and head
> > circumference are still following a curve, but she's been hovering at
> > 16 lbs for a while now. Thankfully, the Dr said that he's not
> > concerned about her from an endocrinological standpoint, and referred
> > us to a nutritionist. The nutritionist recommended switching to
> > Pediasure from her formula for more calories per ounce, but I'm
> > nervous about the sugar content (18g per 8oz). In addition, she will
> > NOT open her mouth if she's teething and will go a week or more
> > without any solids whatsoever, during this time. Between this and the
> > sick animals at the emergency animal hospital I work at, I'm worried
> > that I may give her a complex with how excited I get when anyone eats.
> > I'm sure we're not the only ones facing feeding issues. What higher
> > calorie diets have others put their babies on, if any?
> >
> > Also, I was wondering what you do for a living, as parents and
> > caretakers of 11q kids who have so many doctor and specialist
> > appointments. Right now, I only work on weekends and my husband works
> > during the week so that one of us can be with her all the time, with
> > the exception of the one day per week that I have class. We're both
> > looking for new jobs, and, unless I manage to find something part
> > time, or maybe 3rd shift (and give up sleep), I don't know how all the
> > scheduling will work.
> >
> > Thanks!
> > <3,
> > Kristen
> >
>

 

Hi Kristen,
My boys have always been very small and it is very common with many 11q kids. It seems like my boys would have little growth spurts and then stay at one weight for a long time--in fact I actually remember one of them being at 16 lbs. for like 6 months. Both of my boys were on pediasure in addition to their regular diets up until maybe 3 years ago (they are 8 and 10 now). It gave them the extra calories and additional nutrition, but it never really helped them grow. It did give me peace of mind though when they had harder times eating. The doctor finally decided to take them off though because they are healthy weights for their heights and they eat really well (as long as it's mashed because they don't chew). Brayden (my 10 year old) has never been on the charts for height and weight and now he has been stuck at around 40 lbs. for the last 2 years. Zachary (age 8) occasionally hits the 5th percentile on the charts and he is 40 lbs. also. He seems to be growing more though. I am guessing that Brayden might be missing some growth hormones, but I haven't worried too much about it because even if he is, I don't plan to have them give him growth hormone. The pediatrician has suggested that we go back to the endocrinologist to find out for sure if that is what is going on, but she also didn't recommend that we give him growth hormone even if he is missing it.

--- In 11q_disorders@yahoogroups.com, Kristen Haley <kristenhaley@...> wrote:
>
> Hi everyone,
> We've already had our first visit to the endocrinologist for Ayah, now
> just a few weeks past the 1 year mark. Her height and head
> circumference are still following a curve, but she's been hovering at
> 16 lbs for a while now. Thankfully, the Dr said that he's not
> concerned about her from an endocrinological standpoint, and referred
> us to a nutritionist. The nutritionist recommended switching to
> Pediasure from her formula for more calories per ounce, but I'm
> nervous about the sugar content (18g per 8oz). In addition, she will
> NOT open her mouth if she's teething and will go a week or more
> without any solids whatsoever, during this time. Between this and the
> sick animals at the emergency animal hospital I work at, I'm worried
> that I may give her a complex with how excited I get when anyone eats.
> I'm sure we're not the only ones facing feeding issues. What higher
> calorie diets have others put their babies on, if any?
>
> Also, I was wondering what you do for a living, as parents and
> caretakers of 11q kids who have so many doctor and specialist
> appointments. Right now, I only work on weekends and my husband works
> during the week so that one of us can be with her all the time, with
> the exception of the one day per week that I have class. We're both
> looking for new jobs, and, unless I manage to find something part
> time, or maybe 3rd shift (and give up sleep), I don't know how all the
> scheduling will work.
>
> Thanks!
> <3,
> Kristen
>

Hi Kristen,
My boys have always been very small and it is very common with many 11q kids. 
It seems like my boys would have little growth spurts and then stay at one
weight for a long time--in fact I actually remember one of them being at 16 lbs.
for like 6 months.  Both of my boys were on pediasure in addition to their
regular diets up until maybe 3 years ago (they are 8 and 10 now).  It gave them
the extra calories and additional nutrition, but it never really helped them
grow.  It did give me peace of mind though when they had harder times eating. 
The doctor finally decided to take them off though because they are healthy
weights for their heights and they eat really well (as long as it's mashed
because they don't chew).  Brayden (my 10 year old) has never been on the charts
for height and weight and now he has been stuck at around 40 lbs. for the last 2
years.  Zachary (age 8) occasionally hits the 5th percentile on the charts and
he is 40 lbs. also.  He seems to be growing more though.  I am guessing that
Brayden might be missing some growth hormones, but I haven't worried too much
about it because even if he is, I don't plan to have them give him growth
hormone.  The pediatrician has suggested that we go back to the endocrinologist
to find out for sure if that is what is going on, but she also didn't recommend
that we give him growth hormone even if he is missing it.

--- In 11q_disorders@yahoogroups.com, Kristen Haley <kristenhaley@...> wrote:
>
> Hi everyone,
> We've already had our first visit to the endocrinologist for Ayah, now
> just a few weeks past the 1 year mark. Her height and head
> circumference are still following a curve, but she's been hovering at
> 16 lbs for a while now. Thankfully, the Dr said that he's not
> concerned about her from an endocrinological standpoint, and referred
> us to a nutritionist. The nutritionist recommended switching to
> Pediasure from her formula for more calories per ounce, but I'm
> nervous about the sugar content (18g per 8oz). In addition, she will
> NOT open her mouth if she's teething and will go a week or more
> without any solids whatsoever, during this time. Between this and the
> sick animals at the emergency animal hospital I work at, I'm worried
> that I may give her a complex with how excited I get when anyone eats.
> I'm sure we're not the only ones facing feeding issues. What higher
> calorie diets have others put their babies on, if any?
>
> Also, I was wondering what you do for a living, as parents and
> caretakers of 11q kids who have so many doctor and specialist
> appointments. Right now, I only work on weekends and my husband works
> during the week so that one of us can be with her all the time, with
> the exception of the one day per week that I have class. We're both
> looking for new jobs, and, unless I manage to find something part
> time, or maybe 3rd shift (and give up sleep), I don't know how all the
> scheduling will work.
>
> Thanks!
> <3,
> Kristen
>

Hi everyone,
We've already had our first visit to the endocrinologist for Ayah, now
just a few weeks past the 1 year mark. Her height and head
circumference are still following a curve, but she's been hovering at
16 lbs for a while now. Thankfully, the Dr said that he's not
concerned about her from an endocrinological standpoint, and referred
us to a nutritionist. The nutritionist recommended switching to
Pediasure from her formula for more calories per ounce, but I'm
nervous about the sugar content (18g per 8oz). In addition, she will
NOT open her mouth if she's teething and will go a week or more
without any solids whatsoever, during this time. Between this and the
sick animals at the emergency animal hospital I work at, I'm worried
that I may give her a complex with how excited I get when anyone eats.
I'm sure we're not the only ones facing feeding issues. What higher
calorie diets have others put their babies on, if any?

Also, I was wondering what you do for a living, as parents and
caretakers of 11q kids who have so many doctor and specialist
appointments. Right now, I only work on weekends and my husband works
during the week so that one of us can be with her all the time, with
the exception of the one day per week that I have class. We're both
looking for new jobs, and, unless I manage to find something part
time, or maybe 3rd shift (and give up sleep), I don't know how all the
scheduling will work.

Thanks!
<3,
Kristen

Vera,
We would love to have you come!  We are compiling the information, registration
forms, etc. now and they will be posted on our website at www.11qusa.org soon. 
I will also post them here as well. We just got the hotel booked and dates set
so the rest of the information will come soon!

--- In 11q_disorders@yahoogroups.com, "Vera Rubicon" <mail@...> wrote:
>
> We are thinking about going to this conference, but we need some more
information. Is there a website for this or something simular?? We need
something to refere to since we are trying to get some finance for this trip.
> Greetings from Norway ;)
>
> Vera.
>
> ----- Original Message -----
>   From: linzee_carroll
>   To: 11q_disorders@yahoogroups.com
>   Sent: Saturday, October 31, 2009 3:34 AM
>   Subject: [11q_disorders] 2010 Conference
>
>
>     Great news! I just got a contract signed with a hotel for our 2010
conference. It will be held July 7-11, 2010 in San Diego at the Courtyard by
Marriott San Diego Airport/Liberty Station. Here is the hotel's website if you
want to check it out!
http://www.marriott.com/hotels/travel/sanal-courtyard-san-diego-airport-liberty-\
station/
>   We have to get our deposit sent in before they will let us start reserving
rooms at our group's discounted rate, but that should be by the end of next
week. I'll let you know when they have us set up to start making reservations.
I'm excited that things are starting to come together for it! We still need a
LOT of help with fundraising for the conference. If you would like to help out
in fundraising efforts, please let me know. Anything will help! We hope to see
you all in San Diego next summer!
>