Hi Delores..
                     I sell baby goods for a living over here in chilly
scotland.. carseats and their fitting are a large part of our customer base..

    carseats and booster seats have guide lines of height weight and age.. which
all need to be taken in to consideration for the AH child and so we need to take
extra care when fitting for a child with restricted growth..

    i would advise against the booster "CUSHION" ( which is the single seat upon
which the child would sit)  for any child of at least five and under... although
they are available .. my own comfort zone is for a child of  6 plus ( AH)  the
lighter the child the more likely,  in an accident ,that the seat would quite
literally "skoot" right out from underneath the child offering no protection..
the reason a child needs to travel on a booster cushion is to elevate the child
to a height where the seatbelt (which is made and positioned in the car to suit
an adult ) is in  a postion that would not cause restriction of the airways and
damage the internal organs.   (this could cause major problems in the event of
an accident when the seatbelt comes into play)

   The first thing you need to do is to have emily weighed.. if she is 15kg or
more.. she would be able to use highback booster SEAT .. this type of seat is a
class of group 2 - 3 and is suitable from 15 - 36 kg ( approx 3 - 13 years ) it
is forward facing and offers side impact protection.. ( this would protect the
childs head and internal organs in an impact) the headrest is adjustable  and in
some makes the armrests are also adjustable offering maximum fit and comfort.. a
highback booster SEAT also helps to position the seat belt correctly across the
child.. as time goes on the backrest part of this seat can be removed .. and
eventually the child would be sitting on the CUSHION which is left.. as this
form of carseat is longterm it would be quite some time before it would be used
as a cushion alone.. i can recommend Graco and Britax for this type of carseat..
and i hope you can find a supplier for these companies in America? if you do
manage to locate a supplier do check
  how emily fits this seat herself.. most importantly where the seatbelt is going
.. you dont want it to be covering her throat or too high over her abdomen which
is a common sight..  also check that the head rest at its lowest height is
compatible to emilys own head height whilst sitting..

   If emily is weighing in under the 15kg she would still need to be in a
standard forward facing carseat for her own safety..  i know its difficult when
they see their peers doing other things and they just want to be the same.. but
sometimes there's the need to stick to our guns.. and im afraid in car safety is
one of them gun sticking times.. i hope that this is a little help to you.. if
not in what TO buy then hopefully in what to NOT buy.. a big big well done for
emily on getting dressed all by herself.. what a clever girl..      i wish you
and your family well Delores
                                               Kind regards Angela  mum to Jade
16yrs Shaun 14yrs and baby Gracie 11months old    ( Shaun as a baby,  had the
diagnosis of Achon.. which then changed to Pseudo and just last week to SED,, do
as you can imagine.. we dont know wether we are coming or going!!) but just one
day at a time eh... you take care and i hope all goes well in the carseat hunt
                                                                                     
Ang x

DELORES OSBORNE <delosbo@...> wrote:
           Hi everyone.
I haven't posted in a while. there are a lot of new members now.
My grandaughter, emily, (achon) will be four years old dec. 12.
She is beginning to notice she is different than her sister mary ellen, who will
be seven dec.8.and is regular height.
Emily is trying to do everything her sister does,and she gets very frustrated
when she can't do it exactly like mary ellen does it.
The guestion i want to ask is when do you let your child ride in a booster seat?
Emily has a regular heighth cousin that is six months younger than she is and he
has been in a booster for a few months.
When she rides in the booster seat her whole attitude changes. she can see out
of the window and turn her head to see the veiw beside her and talks to everyone
we pass.
If you go bye the rules for regular heighth children she will be seven before
she gets out of her car seat..
I also know safety comes first.
Is anyone haveing the same problem?
Emily dressed herself for the first time yesterday..she was so proud of
herself..she put her hineypanties,shirt and pants on right bye herself. She
wouldn't let me help her..
Now she wants to learn how to tie a knot..

Sorry so long.....

Thanks Delores


---------------------------------
Everyone is raving about the all-new Yahoo! Mail.

[Non-text portions of this message have been removed]






[Non-text portions of this message have been removed]

Nicky,

Sam didn't used to go everyday as he does now. Here are some natural
(ie, non pharma drug) things to try to encourage more regular bowel
movements. These continue to work for us:

First of all, make sure she drinks plenty of water. Not enough water
means harder stools that can be painful and difficult to pass.

Encourage physical activity and try adding some of these foods to her
regular diet: Fruits (grapes, dates, bananas, figs, prunes, plums),
fruit juices (grape juice, apple juice, pear juice, cherry, prune
juice), legumes (peas, beans), vegetables like broccoli and spinach,
other sources of fiber such as bran flakes or bran cereal and oatmeal.
Fruit juices aren't as good as eating fruits since you miss out on
additional fiber.

Sam was never big on dairy products with the exception of yogurt.
Dairy products can cause constipation and many people have allergic
reactions to it ranging from the very mild to those that are severe.
An occasional pot of yogurt hasn't affected Sam's regularity. If you
get yogurt, go for brands which contain active cultures, but avoid
serving it 3-4 hours before bedtime.

You can also massage her abdomen once a day to aid bowel movement. Any
baby/child massage book will show you how. You can discontinue this
once her movements are become regular.

Good luck!
Amelia

Hi Ruth--

Just wanted to check in with you guys on planning a
baking/cooking/something or other at out house between now and the
end of the year. Perhaps the first weekend in December? Since Janis
and Becky both like to cook, we could let them plan the event.

Ruth, I was also wondering if you have heard any more about the
possibility of Camp Little People being scheduled for July as opposed
to June? Hopefully, that would work out for everyone.

Hope all is well at your house. We took a tour of Bishop Fenwick a
week ago and Becky seemed to like it and is interested in going
there. I too thought it would be a good match for her. There is a
4-hour admission test on the Saturday before Thanksgiving which will
be awful. Have you looked into where Janis will be going next year or
is it too early?

This was the first year Dan didn't go out with either child for
Halloween and he was bummed! Becky had been invited to a party and
Tim was out with his friends. Hope your Halloween was a happy one.

What a relief about Jacob Roloff! Matt should have his head examined
for even thinking that catapult was a good idea. But what do you
expect a mom to say.

Take care. Write soon.


Barbara

My pediatrician has recommended Mary Elizabeth get a flu shot.  I get
them for my other children, but they never got one until they were
older.  She is now 7 1/2 months old and she has had a constant cold
and now has her second ear infection.  Are there any contraindications
with achon babies and the flu shot?  I am taking her back to the
doctor next week for him to look at ear again and he wanted to do the
vaccine then.

Laurin
Mom to Mary Elizabeth 7 months (achon), Alex 16 (AH)& Kathryn 11 (AH)

hi there... our daughter makayla has hypo... and often goes for a few days to a
week.. but recently we've been having pear juice at night and it seems to help
   ----- Original Message -----
   From: Nicky Reenea' Ehle
   To: parentsoflittlepeople2@yahoogroups.com
   Sent: Monday, October 30, 2006 6:42 PM
   Subject: [Parents of Little People 2] bathroom problem


   I was wondering if anyone has had a problem with their achon child not
   going #2 for atleast a week at a time? My Emma, 5 years achon, goes
   maybe once a week. Her doctor put her on something called GlycoLax but
   it made matters worse. The doc says her colon has been stretched out
   of shape & that we need to leave her on the laxative for 6 months so
   the colon can reshape. He did not do an exray or anything to determine
   the colon being "stretched out". She doesn't seem to be in any pain
   when she doesn't go for a week, but it worries me a little bit. Any
   help? Thanks Nick, mom to 2 great ah kids & Emma 5 achon






[Non-text portions of this message have been removed]

Hi Delores,
When Jeremy was about 6 we changed him to a booster seat, but it was
one that had a 5 point harness. He used the harness till he reached
the 18kg weight maximum for it. Now he just uses the regular booster
seat, and he never questions his use of it.
If we get booster seats with the 5 point harness here, in New Zealand,
then I'm sure you'd be able to get an equivalent in America.

Caela
Mum to Jeremy, 8, achon, NZ

--- In parentsoflittlepeople2@yahoogroups.com, Vita <vita@...> wrote:
>
> Delores,
>
> Look at the link below -- 4 years old is A-okay for a booster seat
in North
> Carolina:
>
> http://www.infant-car-seats.com/states/car-seats-laws-NorthCarolina.html
>
> While the law is 8 years old and 80 pounds for no carseat/booster seat,
> you'll just have to play it by ear to see how Emily wants to handle
it when
> she's 8.  Since she most likely won't weigh 80 pounds until she's an
adult,
> you can forget that part.  Stefan used a booster seat in the car
starting
> at age 4 and until he was 8-10, I think.
>
> Vita
>
>
>
> At 06:07 AM 10/31/2006, you wrote:
> >THANKS  MARA.
> >
> >   WE LIVE IN NORTH CAROLINA
> >
> >   I WILL CHECK ON THE RULES.
> >
> >   DELORES
>

Good luck Sam!!! Keep in touch and let us know when you bring your son home!!

Rosita (mom of Romina 3ys AH, and Alan 8ms AC)





________________________________
> To: parentsoflittlepeople2@yahoogroups.com
> From: sam.mielbrecht@...
> Date: Tue, 31 Oct 2006 18:04:50 +0000
> Subject: [Parents of Little People 2] Our new son
>
> I wanted to share our excitement with all of you! We traveled to
> Russia a few weeks ago and met our new son. His name is Timur (3
> years old, achon). We are praying that we'll be able to bring him
> home by Christmas but it is always hard to tell with international
> adoption and Russia in particular. We are reading every post here
> wanting to learn all we can... you guys have been such a great
> resource! Thanks.
> We are in Seattle so I'm hopeful about finding good specialists. If
> anyone has any recommendations - that would be great. We are thinking
> we may need a good ENT. In his medical report it says that he falls
> asleep easily but doesn't sleep well...and when we were there we could
> hear him breathing...so we're wondering about apnea issues. He has a
> few other health concerns as well.
> Thanks for letting us share our joy with all of you and again, if any
> of you have physicians you would recommend in Seattle, we'd really
> appreciate it!
> Blessings,
> Sam (mom to Jordan 7, Elianna 2, and Timur 3 achon)
>

I wanted to share our excitement with all of you!  We traveled to
Russia a few weeks ago and met our new son.  His name is Timur (3
years old, achon).  We are praying that we'll be able to bring him
home by Christmas but it is always hard to tell with international
adoption and Russia in particular.  We are reading every post here
wanting to learn all we can... you guys have been such a great
resource! Thanks.
We are in Seattle so I'm hopeful about finding good specialists.  If
anyone has any recommendations - that would be great.  We are thinking
we may need a good ENT.  In his medical report it says that he falls
asleep easily but doesn't sleep well...and when we were there we could
hear him breathing...so we're wondering about apnea issues.  He has a
few other health concerns as well.
Thanks for letting us share our joy with all of you and again, if any
of you have physicians you would recommend in Seattle, we'd really
appreciate it!
Blessings,
Sam (mom to Jordan 7, Elianna 2, and Timur 3 achon)

Delores,

Look at the link below -- 4 years old is A-okay for a booster seat in North
Carolina:

http://www.infant-car-seats.com/states/car-seats-laws-NorthCarolina.html

While the law is 8 years old and 80 pounds for no carseat/booster seat,
you'll just have to play it by ear to see how Emily wants to handle it when
she's 8.  Since she most likely won't weigh 80 pounds until she's an adult,
you can forget that part.  Stefan used a booster seat in the car starting
at age 4 and until he was 8-10, I think.

Vita



At 06:07 AM 10/31/2006, you wrote:
>THANKS  MARA.
>
>   WE LIVE IN NORTH CAROLINA
>
>   I WILL CHECK ON THE RULES.
>
>   DELORES

Hi Nicky,
This is a big issue in our home so I wanted to let you know what we've
learned.
Our son Jordan (7 years AH) has wrestled with constipation his whole
life.   He has some sensory integration issues which they think
contributes to this issue but regardless it is still a big issue for
us.
First of all - in what way does the GlycoLax make the issue worse?  I
know I was hesitant to have Jordan on it but it really has helped us
(and it isn't supposed to be habit forming like other laxatives).  The
other thing that is HUGE for Jordan is that we have found that milk
products cause him to be constipated (same for our daughter - 2 years
old).  Our pediatrician used to say this isn't possible but has since
come to see the corrolation with other kids as well.
So - I'm not sure if you have access to a naturopath or anyone who
does food sensitivity testing but it could really help.
The other big thing for us is that we just didn't stay on top of it
enough when it was first a problem so we are now dealing with the
mental aspect of (I didn't go for a while, now I went, it hurts so I'm
going to avoid going, so again - when I finally MUST go, it
hurts, .... and so on and so on).   Our pediatrician said the same
thing - when the colon gets stretched out, the body doesn't feel the
need to go as much so the cycle is endless unless you intervene and
make it so easy that they can't wait.

I wish you the best.  Feel free to e-mail me directly if you'd like. :)

Blessings,
Sam (mom to Jordan, 7 AH; Elianna, 2 AH and Timur 3 achon - waiting to
come home from Russia).

--- In parentsoflittlepeople2@yahoogroups.com, "Nicky Reenea' Ehle"
<nicky.ehle@...> wrote:
>
> I was wondering if anyone has had a problem with their achon child
not
> going #2 for atleast a week at a time? My Emma, 5 years achon, goes
> maybe once a week. Her doctor put her on something called GlycoLax
but
> it made matters worse. The doc says her colon has been stretched out
> of shape & that we need to leave her on the laxative for 6 months so
> the colon can reshape. He did not do an exray or anything to
determine
> the colon being "stretched out". She doesn't seem to be in any pain
> when she doesn't go for a week, but it worries me a little bit. Any
> help? Thanks Nick, mom to 2 great ah kids & Emma 5 achon
>

Hi Sue,

As others have said, it's important to follow the achon charts when
judging your baby's weight gain. And keep in mind that it's better to be
on the lean side of the average line. Even so, it probably would be
better if Aidan had regained his birth weight by now. I went through
this with my daughter Lucia (23 months, achon) so I do sympathise. Have
you tried increasing the number of breastfeeds? Lucia was quite sleepy
in her first weeks and I ended up waking her for feeds every few hours
in an attempt to put some weight on her. She has some tongue
coordination issues and could never manage a bottle, which meant that
formula supplements weren't an option for us, although we did try.

The advice I was given about growth hormone is that it doesn't seem to
help achons. It probably just speeds up the growth that would have
occurred anyway, but can increase the disproportion-- that is, any extra
growth occurs in the trunk.

The limited mobility in the elbows is a typical achon characteristic.
Are your doctors following the Health Supervision Guidelines for
Children with Achondroplasia? You can download these, along with the
growth charts, from the files section of the POLP site.

Good luck.

Jenni

THANKS  MARA.

   WE LIVE IN NORTH CAROLINA

   I WILL CHECK ON THE RULES.

   DELORES


---------------------------------
Get your email and see which of your friends are online - Right on the  new
Yahoo.com

[Non-text portions of this message have been removed]

There's nothing wrong with having her in a booster seat, especially if she's
enjoying it! My girls, Misha (7) and Ryanna (9) - are both still in booster
seats. Actually, to be honest, Misha is still in a car seat, but we decided to
upgrade to one that's not "babyish". Because Misha is still so small - 32 lbs
and 3'5" (she still fits into 24M/2T clothes even) we kept her in her toddler
car seat all this time for practical reasons, but she's enjoying the new car
seat since it's more like a booster seat than a car seat and she can see more
out the window now without the car seat blocking her way.

   At any rate, you also have keep in mind that each state has different laws for
car seat/booster seats as to what age/height/weight a child has to be before
they can move up or out of car/booster seats. Ryanna is still in her booster
merely because she wants to be, not that she has to be, she just likes being
able to see out the window better is all. If FLA ever passes the law where kids
under 60 lbs have to remain in a booster, however, as they were discussing a few
years back - heck, if that were to happen then it would take years before either
of them get out of their car/booster seats lol! Best bet is to check out what
your state law is far as what restrictions/requirements there are for
car/booster seats and go from there. If the law doesn't require the booster and
she's enjoying it, I say leave well enough alone. After all, who doesn't want to
have the little ones comfy and cosy in the car eh? :P

   ~~Mara~~


DELORES OSBORNE <delosbo@...> wrote:
           Hi everyone.
I haven't posted in a while. there are a lot of new members now.
My grandaughter, emily, (achon) will be four years old dec. 12.
She is beginning to notice she is different than her sister mary ellen, who will
be seven dec.8.and is regular height.
Emily is trying to do everything her sister does,and she gets very frustrated
when she can't do it exactly like mary ellen does it.
The guestion i want to ask is when do you let your child ride in a booster seat?
Emily has a regular heighth cousin that is six months younger than she is and he
has been in a booster for a few months.
When she rides in the booster seat her whole attitude changes. she can see out
of the window and turn her head to see the veiw beside her and talks to everyone
we pass.
If you go bye the rules for regular heighth children she will be seven before
she gets out of her car seat..
I also know safety comes first.
Is anyone haveing the same problem?
Emily dressed herself for the first time yesterday..she was so proud of
herself..she put her hineypanties,shirt and pants on right bye herself. She
wouldn't let me help her..
Now she wants to learn how to tie a knot..

Sorry so long.....

Thanks Delores


---------------------------------
Everyone is raving about the all-new Yahoo! Mail.

[Non-text portions of this message have been removed]






   Better to write for yourself and have no public,
   than to write for the public and have no self.
   ~ Cyril Connolly ~


---------------------------------
  All New Yahoo! Mail – Tired of Vi@gr@! come-ons? Let our SpamGuard protect you.

[Non-text portions of this message have been removed]

Hi everyone.
   I haven't posted in a while. there are a lot of new members now.
   My grandaughter, emily, (achon) will be four years old dec. 12.
   She is beginning to notice she is different than her sister mary ellen, who
will be seven dec.8.and is regular height.
   Emily is trying to do everything her sister does,and she gets very frustrated
when she can't do it exactly like mary ellen does it.
   The guestion i want to ask is when do you let your child ride in a booster
seat?
   Emily has a regular heighth cousin that is six months younger than she is and
he has been in a booster for a few months.
   When she rides in the booster seat her whole attitude changes. she can see out
of the window and turn her head to see the veiw beside her and talks to everyone
we pass.
   If you go bye the rules for regular heighth children she will be seven before
she gets out of her car seat..
   I also know safety comes first.
   Is anyone haveing the same problem?
   Emily dressed herself for the first time yesterday..she was so proud of
herself..she put her hineypanties,shirt and pants on right bye herself. She
wouldn't let me help her..
   Now she wants to learn how to tie a knot..

   Sorry so long.....

   Thanks   Delores


---------------------------------
Everyone is raving about the  all-new Yahoo! Mail.

[Non-text portions of this message have been removed]

Hi Sue,
Glad to hear an update on baby Aidan!  Does he seem satisfied after a
nursing session?  How many times per day is he nursing?  Sometimes it
can be helpful to pump for a couple of days and bottle feed the
expressed milk just to get an idea of how much he is eating.  I can
see why they'd be a little concerned about a weight loss, but I would
give it a couple more weeks and see how he does.

Seamus has the exact same issue with his elbows, like I'm sure many of
our achon kids have!  Perfectly normal for them.  PT was not
recommended by Dr. Scott, our dwarfism specialist.  Many peds are
quick to suggest PT because they aren't aware of what's normal for an
achon and what's not.  Do you know if there are any peds or
geneticists in your area who have seen kids with achon?

In regards to the growth hormone...we never even thought about this as
a possibility, because as Dr. Scott told us, Seamus does not have
growth-hormone deficient dwarfism.  He told us that they could give
Seamus' growth hormone to a growth-hormone deficient dwarf, and that
dwarf would grow!  Interesting.  So I do know that there have been
studies about hormone and achon, but I just don't believe it would be
worth it to put him through that unnecessarily.
Hope everything else is going well!

Emily, mom to Seamus 15 months achon

--- In parentsoflittlepeople2@yahoogroups.com, "loveangel12275"
<shoile@...> wrote:
>
> Hi This is Sue Hoile wanting to know if any of you have had or had
> the same problem of your babies not gaining weight at the rate that
> the pediatrician reccommends?  Aidan was 8lbs 3ozs at birth, now he
> only ways 7lbs 6ozs as of Friday the 26th of October 2006.  They
> want him to be gaining at a rate of an ounce a day.  I am currently
> breastfeeding him solely but they have suggested that I offer him
> formula after nursing him.  That hasn't worked because after nursing
> and I offer him the bottle of formula, he will suck down about half
> an ounce and then just puke it right back up.  I really think he is
> getting enough to eat just from the breast.  He will take the
> formula just as a feeding.  He has been getting enough wet and poopy
> diapers even without adding formula to his diet.
>
> Oh, I have one more question about growth hormone treatment.  Dr.
> Thaddeaus Kurczynski has reccommened that we talk to Aidan's
> Pediatrician to have him go to a endocrinologist for growth hormone
> therapy.  What do you think of this?  I would appreciate any and all
> information reguarding the hormone therapy for children with
> achondroplasia.
>
> Also Aidan as limited mobility in his elbows.  He can't fully extend
> his arms fully straight out. And the help me grow coordinator has
> suggested getting a script for physical therapy.  What your take on
> this subject?
>
> Thanks for everything!!!
>
> Sue Hoile mom to Brandon-4 AH, Elijah-2 AH, & Aidan-5weeks Achon
>

Hi Sue,
I would have to disagree with Patty about introducing solids to
Aidan's diet. Breast milk is designed for your baby, and there is
seldom a need to introduce solids (or anything else, including formula
or water) to an exclusively b/f baby before 4 months of age. If Aidan
is peeing and pooping ok, and is a happy baby, then don't worry. It
sounds to me like the doctor you saw is not familiar with achondroplasia!
Achons have a tendency to gain weight easily. Ideally his weight
should be between 25% and 50% against height on the ACHON charts, not
growth charts for average height children. (I'm pretty sure there are
achon charts in the files section - menu on the left). It may be
beneficial for you to print the achon charts off and give a copy to
your doctor. If the doctor gets antsy about you providing them, or is
treating you like you know nothing, then I'd suggest it's time to find
a new doctor. Ideally, a doctor that is familiar with achon would  be
best, failing that, you need one that is willing to listen, and accept
that there are people (doctors and other parents) who are familiar
with achon.
There's always parents here willing to offer advice - although we are
by no means doctors, most of us have either seen dwarfism specialists,
or have read up extensively, or have learnt from other parents who
have been where we are so to speak.

Caela
Mum to Jeremy, 8, achon, New Zealand

\--- In parentsoflittlepeople2@yahoogroups.com, "Grant & Patty Bowers"
<gpsab@...> wrote:
>
> Hi Sue~
>  Sounds like it might be time to introduce a little bit of cereal
into Aiden's bottle. Our Amy was just like your Aiden, and in fact was
just a step or two away of being diagnosed with failure to thrive!
Even though I know it's wrong, that made me feel like I was a bad
mother~ like I couldn't even feed my own child or something!
(WRONG!!!) Then, I was going down the route of a g~tube, and surgery,
etc., and I wasn't about to put Amy through all that, without giving
it my all~ just trying everything I could think of.
>  Anyway~ Talk to your doctor about thickening his milk with a little
cereal, I would say at the night time. Give him the bottle with the
cereal first, and then nurse him.
> To help the cereal come out easier, cut a little X in the nipple~
you might have to play around with several nipples to get the right size.
>  After a few tries, Aiden will probably get the hang of it, and end
up sleeping like a log, to boot~ BONUS points for you! :D
>  Don't worry~ you're only starting solids a little early, and I am
only talking about a teaspoon or so of cereal, anyway.
>  Give it some thought, talk it over with your doctor, and see how it
goes~
>  Keep us posted~
>  Take care,
>  Patty :D
>   ----- Original Message -----
>   From: loveangel12275<mailto:shoile@...>
>   To:
parentsoflittlepeople2@yahoogroups.com<mailto:parentsoflittlepeople2@yahoogroups\
.com>

>   Sent: Monday, October 30, 2006 2:00 PM
>   Subject: [Parents of Little People 2] 5-Week Old Baby Aidan
>
>
>   Hi This is Sue Hoile wanting to know if any of you have had or had
>   the same problem of your babies not gaining weight at the rate that
>   the pediatrician reccommends? Aidan was 8lbs 3ozs at birth, now he
>   only ways 7lbs 6ozs as of Friday the 26th of October 2006. They
>   want him to be gaining at a rate of an ounce a day. I am currently
>   breastfeeding him solely but they have suggested that I offer him
>   formula after nursing him. That hasn't worked because after nursing
>   and I offer him the bottle of formula, he will suck down about half
>   an ounce and then just puke it right back up. I really think he is
>   getting enough to eat just from the breast. He will take the
>   formula just as a feeding. He has been getting enough wet and poopy
>   diapers even without adding formula to his diet.
>
>   Oh, I have one more question about growth hormone treatment. Dr.
>   Thaddeaus Kurczynski has reccommened that we talk to Aidan's
>   Pediatrician to have him go to a endocrinologist for growth hormone
>   therapy. What do you think of this? I would appreciate any and all
>   information reguarding the hormone therapy for children with
>   achondroplasia.
>
>   Also Aidan as limited mobility in his elbows. He can't fully extend
>   his arms fully straight out. And the help me grow coordinator has
>   suggested getting a script for physical therapy. What your take on
>   this subject?
>
>   Thanks for everything!!!
>
>   Sue Hoile mom to Brandon-4 AH, Elijah-2 AH, & Aidan-5weeks Achon
>
>
>
>
>
> [Non-text portions of this message have been removed]
>

One of those wooden climbing structures worked well for Stefan in
elementary, even though he couldn't climb up on all of the levels -- this
wouldn't be a problem for an achon like Emma like it can be for many DD
children.  Having handrails (metal or plastic, not wood) can make a
difference if Emma's school is considering one of these playstructures
because while Emma shouldn't have a problem with ladders and steps, having
a good handhold is always good for LP children.

Vita



At 07:38 PM 10/30/2006, you wrote:
>Hello all,
>  I haven't posted in a while but I read daily. I have a question. My
>little girl, Emma starts kindergarten next year & the school is
>looking to get some new playground equipment put in that she,as well
>as the other kindergarteners & 1st grade kids can use. Last night I
>met with a lady that designs the playground stuff & she asked me for
>some suggestions. I was wondering if any of you hade some advice on
>what would be good for an achon child that the other kids can use
>also. They are putting this equipment in specifically for Emma, but it
>needs to be for everyone. Any help would be appreciated. Thanks a lot.
>Nick mom to Marly 16 (ah) Rayme 10 (ah) & Emma 5 (achon)

VITA THNX FOR THE INFO,I WILL KEEP THIS INFO AND STORE IT SAFE FOR
NOW...MY DAUGHTER IS FINE, SHE IS STARTING TO MOVE AROUND A BIT MORE
DAY BY DAY.--- In
parentsoflittlepeople2@yahoogroups.com, "ROSALINDA"
<mas_sds_jrs@...> wrote:
>
> well anyone has ever had a problem with their lp child not walking
or
> complaining their back hurts & saying i forgot how to walk momma
after
> a fall? well this happened and we ended up in the ER for a couple
> days, they didnt find anything wrong. they suggested to see her
reg.
> orthopedic doc of course. we did 2 days later. she got admitted
there
> on the spot, had x-rays done even an MRI. her spine might look
like
> it's compressed....? not sure though...or are they hiding
something
> from us? he said he couldnt make the decision he made us go to a
> neurosurgery doc. at a childrens hosp. he calls in another doc. to
his
> office & ask to look at the MRI results from the other hosp. STILL
no
> clue, there's no fracture,nothing broken they say, THAT'S GOOD!
but
> there is instability, thats's all they say.after being there all
day
> running around doing more x-rays they want to do x-rays of her
head.
> after looking at them & needing more info. they want more rays
with
> fluoro or somethng like that, but my daughter was tired already
and
> didnt cooperate. they gave up & said we'll have to sedate her but
not
> today we'll call you back meanwhile she must wear this neck-brace
at
> all times & limited activities,no school. YOU MAY GO HOME........
>

well DEE
my daughter is doing fine, she is startingto take a few steps on her
own. Sometimes i think because she has some pain, then she wont
walk . The docs. still, after me calling today did not return my
call..... I, we,are praying that she get through this w/out surgery
or anything in that area! But today she took six steps on her own
without assistance, that is.I will keep you posted if anything. Also
thanks for the info i will keep those in mind...--- In
parentsoflittlepeople2@yahoogroups.com, "ROSALINDA"
<mas_sds_jrs@...> wrote:
>
> well anyone has ever had a problem with their lp child not walking
or
> complaining their back hurts & saying i forgot how to walk momma
after
> a fall? well this happened and we ended up in the ER for a couple
> days, they didnt find anything wrong. they suggested to see her
reg.
> orthopedic doc of course. we did 2 days later. she got admitted
there
> on the spot, had x-rays done even an MRI. her spine might look
like
> it's compressed....? not sure though...or are they hiding
something
> from us? he said he couldnt make the decision he made us go to a
> neurosurgery doc. at a childrens hosp. he calls in another doc. to
his
> office & ask to look at the MRI results from the other hosp. STILL
no
> clue, there's no fracture,nothing broken they say, THAT'S GOOD!
but
> there is instability, thats's all they say.after being there all
day
> running around doing more x-rays they want to do x-rays of her
head.
> after looking at them & needing more info. they want more rays
with
> fluoro or somethng like that, but my daughter was tired already
and
> didnt cooperate. they gave up & said we'll have to sedate her but
not
> today we'll call you back meanwhile she must wear this neck-brace
at
> all times & limited activities,no school. YOU MAY GO HOME........
>

Hello all,
  I haven't posted in a while but I read daily. I have a question. My
little girl, Emma starts kindergarten next year & the school is
looking to get some new playground equipment put in that she,as well
as the other kindergarteners & 1st grade kids can use. Last night I
met with a lady that designs the playground stuff & she asked me for
some suggestions. I was wondering if any of you hade some advice on
what would be good for an achon child that the other kids can use
also. They are putting this equipment in specifically for Emma, but it
needs to be for everyone. Any help would be appreciated. Thanks a lot.
Nick mom to Marly 16 (ah) Rayme 10 (ah) & Emma 5 (achon)

I was wondering if anyone has had a problem with their achon child not
going #2 for atleast a week at a time? My Emma, 5 years achon, goes
maybe once a week. Her doctor put her on something called GlycoLax but
it made matters worse. The doc says her colon has been stretched out
of shape & that we need to leave her on the laxative for 6 months so
the colon can reshape. He did not do an exray or anything to determine
the colon being "stretched out". She doesn't seem to be in any pain
when she doesn't go for a week, but it worries me a little bit. Any
help? Thanks Nick, mom to 2 great ah kids & Emma 5 achon

Go to TLC.com and click on the link for the LPBW show and there's a  detailed
update and an address given.

If you are on more than one list-serv, please forgive the duplication  ...


[Non-text portions of this message have been removed]

Hi Sue~
  Sounds like it might be time to introduce a little bit of cereal into Aiden's
bottle. Our Amy was just like your Aiden, and in fact was just a step or two
away of being diagnosed with failure to thrive! Even though I know it's wrong,
that made me feel like I was a bad mother~ like I couldn't even feed my own
child or something! (WRONG!!!) Then, I was going down the route of a g~tube, and
surgery, etc., and I wasn't about to put Amy through all that, without giving it
my all~ just trying everything I could think of.
  Anyway~ Talk to your doctor about thickening his milk with a little cereal, I
would say at the night time. Give him the bottle with the cereal first, and then
nurse him.
To help the cereal come out easier, cut a little X in the nipple~ you might have
to play around with several nipples to get the right size.
  After a few tries, Aiden will probably get the hang of it, and end up sleeping
like a log, to boot~ BONUS points for you! :D
  Don't worry~ you're only starting solids a little early, and I am only talking
about a teaspoon or so of cereal, anyway.
  Give it some thought, talk it over with your doctor, and see how it goes~
  Keep us posted~
  Take care,
  Patty :D
   ----- Original Message -----
   From: loveangel12275<mailto:shoile@...>
   To:
parentsoflittlepeople2@yahoogroups.com<mailto:parentsoflittlepeople2@yahoogroups\
.com>
   Sent: Monday, October 30, 2006 2:00 PM
   Subject: [Parents of Little People 2] 5-Week Old Baby Aidan


   Hi This is Sue Hoile wanting to know if any of you have had or had
   the same problem of your babies not gaining weight at the rate that
   the pediatrician reccommends? Aidan was 8lbs 3ozs at birth, now he
   only ways 7lbs 6ozs as of Friday the 26th of October 2006. They
   want him to be gaining at a rate of an ounce a day. I am currently
   breastfeeding him solely but they have suggested that I offer him
   formula after nursing him. That hasn't worked because after nursing
   and I offer him the bottle of formula, he will suck down about half
   an ounce and then just puke it right back up. I really think he is
   getting enough to eat just from the breast. He will take the
   formula just as a feeding. He has been getting enough wet and poopy
   diapers even without adding formula to his diet.

   Oh, I have one more question about growth hormone treatment. Dr.
   Thaddeaus Kurczynski has reccommened that we talk to Aidan's
   Pediatrician to have him go to a endocrinologist for growth hormone
   therapy. What do you think of this? I would appreciate any and all
   information reguarding the hormone therapy for children with
   achondroplasia.

   Also Aidan as limited mobility in his elbows. He can't fully extend
   his arms fully straight out. And the help me grow coordinator has
   suggested getting a script for physical therapy. What your take on
   this subject?

   Thanks for everything!!!

   Sue Hoile mom to Brandon-4 AH, Elijah-2 AH, & Aidan-5weeks Achon





[Non-text portions of this message have been removed]

Sue,
    OKay, first thing is tha when Emma was a baby, her doctor wanted her to gain
weight too quickly also. An ounce a day is also what her doc suggested. I
explained to her that achon children aren't supposed to gain weight like that.
She at one point wanted to get Emma G-tube. I flat out told her NO WAY. (we are
no longer with this doctor). Achon children need to be careful how much they
gain because they can't carry too much weight on their smaller size legs. I
would say if Aidan is peeing & pooping then he is probably just fine. Use your
own judgement on that. Next is about the elbows. Achons don't have full elbow
extension. It has not been a problem for Emma except that she can't wipe her own
bottom. (something you don't have to worry about for awhile anyway). As far as
the growth hormone therapy, I think everyone has their own opinions about that.
I myself would choose NOT to do it for Emma. That has to be a personal choice.
If you need anything else, please feel free to
  email me personally at nicky.ehle@... . Nick mom to Marlayna 16 (ah)
Rayme 10 (ah) & Emma 5 (achon)

loveangel12275 <shoile@...> wrote:
           Hi This is Sue Hoile wanting to know if any of you have had or had
the same problem of your babies not gaining weight at the rate that
the pediatrician reccommends? Aidan was 8lbs 3ozs at birth, now he
only ways 7lbs 6ozs as of Friday the 26th of October 2006. They
want him to be gaining at a rate of an ounce a day. I am currently
breastfeeding him solely but they have suggested that I offer him
formula after nursing him. That hasn't worked because after nursing
and I offer him the bottle of formula, he will suck down about half
an ounce and then just puke it right back up. I really think he is
getting enough to eat just from the breast. He will take the
formula just as a feeding. He has been getting enough wet and poopy
diapers even without adding formula to his diet.

Oh, I have one more question about growth hormone treatment. Dr.
Thaddeaus Kurczynski has reccommened that we talk to Aidan's
Pediatrician to have him go to a endocrinologist for growth hormone
therapy. What do you think of this? I would appreciate any and all
information reguarding the hormone therapy for children with
achondroplasia.

Also Aidan as limited mobility in his elbows. He can't fully extend
his arms fully straight out. And the help me grow coordinator has
suggested getting a script for physical therapy. What your take on
this subject?

Thanks for everything!!!

Sue Hoile mom to Brandon-4 AH, Elijah-2 AH, & Aidan-5weeks Achon







Reenea

[Non-text portions of this message have been removed]

Hi This is Sue Hoile wanting to know if any of you have had or had
the same problem of your babies not gaining weight at the rate that
the pediatrician reccommends?  Aidan was 8lbs 3ozs at birth, now he
only ways 7lbs 6ozs as of Friday the 26th of October 2006.  They
want him to be gaining at a rate of an ounce a day.  I am currently
breastfeeding him solely but they have suggested that I offer him
formula after nursing him.  That hasn't worked because after nursing
and I offer him the bottle of formula, he will suck down about half
an ounce and then just puke it right back up.  I really think he is
getting enough to eat just from the breast.  He will take the
formula just as a feeding.  He has been getting enough wet and poopy
diapers even without adding formula to his diet.

Oh, I have one more question about growth hormone treatment.  Dr.
Thaddeaus Kurczynski has reccommened that we talk to Aidan's
Pediatrician to have him go to a endocrinologist for growth hormone
therapy.  What do you think of this?  I would appreciate any and all
information reguarding the hormone therapy for children with
achondroplasia.

Also Aidan as limited mobility in his elbows.  He can't fully extend
his arms fully straight out. And the help me grow coordinator has
suggested getting a script for physical therapy.  What your take on
this subject?

Thanks for everything!!!

Sue Hoile mom to Brandon-4 AH, Elijah-2 AH, & Aidan-5weeks Achon

Jill,

   Just want to confirm your findings.  We have a Family Infant Toddler program
here in VT, same thing, birth to three.  I found them to be a great resource in
what to do and not to do.  Having them there did not speed up his development at
all, he was still about 6 months behind is average height twin in terms of head
control and such.  I liked that they taught us how to stimulate his mind with
his limited mobility.
   Charlie and 5 now and he is smart and very witty.  And as he was already in
the birth the three, we will have a much easier transisition into kindergarten
next year, as the schools know he is coming.
   Suzanne

Jill Henshaw <jhenshaw@...> wrote:
           Just wanted to chime in with my two cents. Nick has used our county
birth to 3 program since he was about 4 months old. While I have
thoroughly enjoyed our therapists(PT, OT and most recently Speech
therapy)they have not quickened Nicholas's development. What they
have done was facilitate the strengths he had. When he started to
push up and army crawl they would bring out the right height wedges
that would allow him different angles and positions to enjoy his new
found skill. Recently he has become interested in drawing and play-
doh and his OT brought a table that was a great height for him to
use on the floor. There are many other examples. Nicholas is now
doing speech therapy(which he definately neeeds) and b/c we were
already in the program it was very simple to get him asessed and
start the necessary therapy.

If you do decide to use PT you have to be prepared to explain the
limitations to the therapists. Their job, of course, is to get
things moving! So to tell them what they can't do can be
frustrating to them but if they are good they will think of other
ways to help, just like Nick's did.

I am not advocating PT just giving my experience.

Jill(Nick 26 months achon, Bess 5, Jack 8)
>
> Thanks for the informative responses. I appreciate all the input
and
> the differing opinions. One of the reasons I posed the question
is
> because in doing research during these last three months I've read
in
> some articles that PT has been recommended for achon children and
in
> others that it is not recommended at all. I was interested in
> finding out what other parents have experienced. Right now we are
> scheduled to see a dwarfism specialist in December and will
certainly
> be interested to hear what she has to say on the subject. Until
then
> we are going to enjoy our new baby, who is just starting to smile
> and "talk" to us!
>
> Thanks again,
>
> Erin
>
>
>
> --- In parentsoflittlepeople2@yahoogroups.com, "Amelia Schuler"
> <amelia_schuler@> wrote:
> >
> > Rosita,
> >
> > My post was not intended as a slight to parents who have chosen
not
> to
> > follow the recommendations of dwarfism specialists. I was merely
> > relaying the position of dwarfism specialists with regard to
> physical
> > therapy for achon infants. In fact, I did not express my
position
> with
> > regard to these guidelines in that post. However, my husband and
I
> > have chosen to follow those recommendations and don't regret
having
> > done so.
> >
> > Differences in opinion among parents here is always welcome and
> never
> > meant to offend. It is a reflection of the diversity in this
group
> and
> > that's a good thing.
> >
> > I fully agree with you that the decision to rear and care for our
> > children ultimately rests with us, the parents. To that end, I
> believe
> > it's important that parents know, at the very least, what
> specialists
> > do know and what specialists recommend in the hope that this
will
> help
> > inform us as we make these decisions for our children's sake. As
I
> > have stated in other posts, these are recommendations. The
decision
> of
> > whether or not to follow them in whole or in part rests with the
> parents.
> >
> > Amelia
> >
>






---------------------------------
Access over 1 million songs - Yahoo! Music Unlimited Try it today.

[Non-text portions of this message have been removed]

I would like to thank you for EVERY recommendation you give us.
I was just giving my own experience with my baby.
I really need your experience and advices as, here in my country (Uruguay, Latin
America) no one knows anything about achondroplasia. It's very difficult for 
us.
We follow the advices of our contact in spanish languague spoken in LPA and the
advices of Fundacion Alpe in Spain.

Thanks,
Rosita.



________________________________
> To: parentsoflittlepeople2@yahoogroups.com
> From: vita@...
> Date: Fri, 27 Oct 2006 19:41:46 -0400
> Subject: Re: [Parents of Little People 2] Re: Physical Therapy
>
> Very well said, Amelia! We should pass on recommendations from dwarfism
> specialists, as well as experience stories -- what parents then choose to
> do with that information is then up to them. I figure that if parents
> didn't want to know these things, they wouldn't be members.
> Vita
> At 11:37 AM 10/27/2006, you wrote:
> >Rosita,
> >
> >My post was not intended as a slight to parents who have chosen not to
> >follow the recommendations of dwarfism specialists. I was merely
> >relaying the position of dwarfism specialists with regard to physical
> >therapy for achon infants. In fact, I did not express my position with
> >regard to these guidelines in that post. However, my husband and I
> >have chosen to follow those recommendations and don't regret having
> >done so.
> >
> >Differences in opinion among parents here is always welcome and never
> >meant to offend. It is a reflection of the diversity in this group and
> >that's a good thing.
> >
> >I fully agree with you that the decision to rear and care for our
> >children ultimately rests with us, the parents. To that end, I believe
> >it's important that parents know, at the very least, what specialists
> >do know and what specialists recommend in the hope that this will help
> >inform us as we make these decisions for our children's sake. As I
> >have stated in other posts, these are recommendations. The decision of
> >whether or not to follow them in whole or in part rests with the parents.
> >
> >Amelia
> >
>

Oh I'm still around.  But mostly on POLP.

Also, I tend to only "but-in" when I have something I hope is valuable to
contribute.

Generally, I try to leave it to the parents to give mutual help.  After all, the
POLP lists are for parents, not old farts like me:-))))

Glad you miss me though:-)

Fred


   ----- Original Message -----
   From: sorkin yermiayiev
   To: parentsoflittlepeople2@yahoogroups.com
   Sent: Sunday, October 29, 2006 4:51 PM
   Subject: [Parents of Little People 2] fred ??? you still there?


   hi fred,
   haven't heard from you in a while. you always have the most
   inspiring words for us.... and rather comical too !!!

   i miss reading your postings.

   daniella
   avital's mommy

   ---------------------------------
   Cheap Talk? Check out Yahoo! Messenger's low PC-to-Phone call rates.

   [Non-text portions of this message have been removed]





[Non-text portions of this message have been removed]

hi fred,
   haven't heard from you in a while. you always have the most
   inspiring words for us.... and rather comical too !!!

   i miss reading your postings.

   daniella
   avital's mommy


---------------------------------
Cheap Talk? Check out Yahoo! Messenger's low  PC-to-Phone call rates.

[Non-text portions of this message have been removed]

My name is Angie. My husband Todd and daughter makayla both have
hypochondroplasia. Todd is 4'11" tall.. and makayla has just turned 3
years old. she has had xray determining her heighth and bloodwork. we
have recently been taking her to our chiropractor who doesn't do any
manual manipulation - but rather uses an activator concentrating on her
lower back and the bowing in her legs. we are seeing a difference and
anything to prevent lower back pain like her daddy has these days.



[Non-text portions of this message have been removed]