Hi Matt~
  I have a question/comment regarding your hotel adaptation kit. Would you email
me privately, please?
  Thanks~
  Patty
gpsab@...<mailto:gpsab@...>

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

Hey Mike-
I'm mom to Dante, 4 yrs, diastrophic dysplasia. And I'm pregnant -
expecting in July. We did save the cord blood for Dante & intend on
doing it for this next baby as well. Our reason for saving it had
nothing to do with Dante having a skeletal dysplasia - we were
unaware of it until after he was born. Who knows if it's
worthwhile... hopefully we'll never have to use it, but we decided to
do it - just in case. If you're asking because you're wondering if
it'll help with something related to your child's dwarfism (if it is
dwarfism at all), I don't think there's any use for it at this point.

We are planning on saving the cord blood for this next baby as well.
As somebody else stated, it is just a personal decision. Sometimes I
feel like we're big fools for doing it - it is very expensive & you
have an annual fee as well - but there's some peace of mind knowing
it's there. Most people I know do not do it. But yes, there are
particular medical benefits for doing it if your child falls into
certain specific areas, and they are always researching other areas
as well.

There's lots of info on the internet if you search it out. Here's one
link: http://www.pregnancyweekly.com/topics/cordblood_askdrsears.asp

Good luck with your decision & your baby!
Lori

--- In parentsoflittlepeople2@yahoogroups.com, "mikekrajewski2000"
<mikekrajewski2000@y...> wrote:
> As those of you that have been following the "Short Femur
Ultrasound"
> thread know, my wife and I are due in a little over a month.  The
> latest ultrasound showed a short femur, but it is unknown what it
> exactly means.  All of the advice, stories, and support we have
> received so far has been a great help.  I thought I would ask
another
> question.
>
> Is it worthwhile to save the cord blood?  I'm not sure of any of
the
> details surrounding doing this, nor do I know about the cost
associated
> with it.  I hear it mentioned from time to time in the media, but
am
> unsure of the purpose of doing so.  Are there medical benefits of
doing
> this?  Are there potential benefits in the future that suggests
doing
> this?
>
> Does anyone in the group have any experience with this?
>
> Thanks once again,
> Mike

Youngmom28of3boys,

My son had FM decompression and shunt placement also at 8 months. The
decompression came first, along with a ventriculostomy to monitor ICP
for three days. His neurosurgeon and geneticist were pretty sure he'd
need a shunt based on his MRIs and the symptoms present, but we did
the ventriculostomy first. There was CSF leakage through the sutures
following FM decompression and ICP remained high, so it was clear
there was no way around shunting.

Shunts are NOT normal procedures for people with achondroplasia. It
USED to be common until dwarfism experts understood better that only a
small percentage of achons really truly need it. On the other hand, it
has been observed that a number of cases of achons that have FM
decompression also require shunting because the decompression alone
does not relieve hydrocephalus that already existed before the surgery.

If your neurologist does not have extensive experience with patients
with achondroplasia, you can ask him/her to consult with a neuro who
does have that experience. Dr. Ben Carson or some of his colleagues at
Johns Hopkins come to mind (he did my son's surgeries).

If you're baby needs a shunt, make sure the neurosurgeon who does it
is not a resident or someone with little experience. You should know
that the rate of infections within the first year is higher when
residents perform the surgery. That's a published fact. Shunting is a
very simple operation compared to other stuff neuros do, but the
kicker is to have good sterile technique to prevent infections and
knowing enough to choose the best place to insert the hardware.

You can visit
http://www.ninds.nih.gov/disorders/hydrocephalus/detail_hydrocephalus.htm
for a fact sheet about hydrocephalus including some info on shunts and
possible complications related to shunting. For a thorough book about
hydrocephalus and shunting in layman's English, including how to
recognize shunt failures and complications, and living with a shunt, I
highly recommend "Hydrocephalus: A Guide for Patients, Families and
Friends" by Toporek and Robinson.

I hope this helps.
Amelia (mom to Samuel; 3, achondroplasia)


--- In parentsoflittlepeople2@yahoogroups.com, "youngmom28of3boys"
<bhrhlr@m...> wrote:
> My eighth month old just had a formen magnum decompression.  His
> incision is barely healed and now they say he needs a shunt.  I know
> that these are normal procedures for people with achondroplasia.  Does
> anyone have any experience or advice with shunts?

My eighth month old just had a formen magnum decompression.  His
incision is barely healed and now they say he needs a shunt.  I know
that these are normal procedures for people with achondroplasia.  Does
anyone have any experience or advice with shunts?

Michelle,

My son had decompression surgery when he was eight months old. He did
well under the circumstances, and recovered from it in no time at all.
You've got good people with the right experience doing the surgery and
the administration of anesthesia at Johns Hopkins, so that's one thing
to keep in mind, as well as the fact that Brayden's prognosis wouldn't
be bright if he didn't have decompression.

You asked if Brayden will be alright. Any surgery having to do with
the brain is understandably nerve wracking in a way that other major
surgeries are not. I can tell you that my son had both decompression
surgery and shunt placement days apart and he's very well. He has
always had good health and a hearty appetite, he's wonderfully
affectionate and engaging, and he is a precocious child.

There's one piece of advice I'd like to pass on: be strong for
Brayden. It will be difficult for you, but don't let him see you
worrying or falling apart, especially in the hospital. The calmer you
are in front of him, the calmer he will be and the less frightening
will be his experience.

Amelia (mom to Samuel; almost 4, achondroplasia)

hi,
i don't have a child with a dual diagnosis.
however my son and i are both lps.
and i teach art to children with autism
i have been working with children with autism for 8 years now.
if you have any questions about autism feel free to ask and i can try
to help.
what state are you in?
stephani
--- In parentsoflittlepeople2@yahoogroups.com, "runningmichelle"
<runningmichelle@y...> wrote:
> My son Harry is 11 years old. He is a little person and also has
been
> diagnosed with autism. I am looking to find someone out there who
has
> a similar child. Looking forward to hearing from you.

Michelle,
My daughter Allie had decompression surgery when she was 2 months old.  Her
skull was pushing into her brainstem.  She was only in the hospital for 2 days. 
Her recovery was fast and she seemed to have very little pain.  We kept her on
the maximum dose of Tylenol but for the most part, everything went wonderfully. 
Her apnea went away.  She is a healthy 16 months old who is walking, talking,
and doing everything else 16 month olds do.  She has a scar on her neck but her
hair will cover it.  Brayden will be just fine!  You'll see.  My prayers are
with you.
Laurie


michelle tucker <michrx12@...> wrote:
Hi, I have posted in the past about my son, Brayden, possibly needing
decompression of the foramen magnum. We went to see Dr. Jallo today
and he said Brayden does in fact need the surgery. He apparantly does
have some type of damage occuring in that area because a couple cysts
have developed. So once the surgery is over hopefully the cysts will
go down or go away. I am really scared about this even though I know
he needs it done. Is he going to be okay? I asked the Dr. if there
were any residual effects from the surgery and he said no (of course
the risks of surgery exist). I just can't believe this is happening
and it breaks my heart to see my child going through all of this. He
has been through more than I have my enitre life. I guess once we
leave the hopsital he can resume normal activity but I still am very
worried. Any advise to settle my nerves?  Thanks, Michelle




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

I will be out of town for one week, starting tomorrow May 27.  If you
have any moderator needs/questions, contact Angel directly.  Her email
address is on the main page.

Vita

dear stephanie
                        my name is Angela.. my son shaun is almost 13 yrs old..
he has pseudeoachondroplasia,, and a happy young man he is.. im also expecting
my third baby in nov.. my consultant will be keeping more of an eye on us this
time.. but i just want to congratulate you on the safe arrival of baby Evan...
who will be just gorgeous... i hope you are keeping well and arn't too
shattered! take lots of care and if you get the chance drop me a wee hello...
kind regards angela ..

stargazersteph <stargazersteph@...> wrote:
hi,
i will try to get in all i have to say, but i have a newborn....so i
might not get to finish my thoughts...
anyway, i will give you a run down of my experience.
i have achondroplasia myself, so that made my preg. hi risk. so i had
to see a perinatologist once a month and have level 2 ultrasounds
once a month.
at 14 weeks i had an ultrascreen test. this was a test my hospital
did instead of the afp. it is a test for downs. anyway, part of the
test is an ultrasound, and something they look at is the nasal bone.
they did not see the nasal bone....at the 20 week ultrasound they
still did not see a nasal bone. the dumb dr. comes back with all
these stats about my risks for downs etc. i was so confused and
upset. my ultrascreen test came back with really good results and
according to that my chances for downs was like 1 in a 100thousand.
so i was so confused as to why the dr was even talking about downs,
when the baby had a 50 % chance of having achon. anyway, a week later
i called a dr who was above him at the hospital, and he said
considering my achon, and considering how good the test results were
for downs, it probably meant the baby had achon. or the baby was
fine. some babies nasal bones don't show up in
ultrasound.....however....they were never sure they saw the nasal
bone even at my last test.
as for the bone measurements. the long bones were only slightly
lagging behind for most of the pregnancy. they said it could mean
achon. or it could just be my short italian heritage.
somewhere at around 30 weeks....one perinatologist thought he saw the
trident hand (an achondroplasia characteristic). he was the first to
publish documentation of that via ultrasound...and it is very hard to
spot via ultrasound. (so i don't know if your dr would be able to
spot  it)
it wasn't until my final ultrasound at 36 weeks that the measurements
really dropped off ...the head was larger and the long bones were
lagging way behind.  i was prepared for this though. the drs. said
that with achondroplasia, many times it doesn't show up in ultrasound
til the very end of a pregnancy.
again, the drs. were never sure of anything until the very end. and
then they still couldn't say 100 percent...because ultrasounds are
never 100 percent.
as for everyone's health. i had a healthy pregnancy. i had a
scheduled c-section at 38 1/2 weeks. because of my achon.- i needed a
c-section. although i think it is better for the achon baby as well.
they were worried about the baby and told me he might have to go to
the special care nursery. but when he was born the neonatologist
looked at him and said he was healthy and he could go to the regular
nursery. his apgar scores were 9--9. i was so happy. you can't get
much higher on those scores...he stayed in our room the whole
hospital stay and did very well. he is now almost 8 weeks old and
doing well.

i hope this helps. this is only my experience....i am apologize for
the poor sentence structure....but i really don't have time to proof
read.
keep us posted.

stephani
mom to evan
--- In parentsoflittlepeople2@yahoogroups.com, "mikekrajewski2000"
<mikekrajewski2000@y...> wrote:
> My wife and I had our final scheduled ultrasound on Friday 5/13.
We
> received a call from our doctor Monday morning saying there was
some
> concern with the development of the baby's femur and he set up an
> appointment with a specialist yesterday.
>
> Our appointment yesterday confirmed the short femur measurement and
> shorter than expected arm measurements, but the doctor did not want
> to speculate as to the meaning of it.  He said that it could mean
one
> of many things, or possibly nothing at all, and didn't want to jump
> to any conclusions yet.  He did mention that it could be an
indicator
> of a dwarfism, but without doing more invasive tests he could not
be
> certain.  The due date of the baby is late June, so he said that a
> lot of the diagnosis and checks will come after the baby is born
and
> he has a chance to look at it outside the womb.
>
> Naturally, my wife and I are concerned about this development in
the
> pregnancy so I am doing some research.  I am wondering what kind of
> experiences parents of little people had during pregnancy and what,
> if anything, my wife and I should be concerned about or be asking
the
> doctor.  Was shorter than expected limb measurements one of the
> indicators of your pregnancy?
>
> Any help, words of encouragement, or advice would greatly be
> appreciated.
>
> Thank you,
>
> Mike




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

--- In parentsoflittlepeople2@yahoogroups.com, "runningmichelle"
<runningmichelle@y...> wrote:
> My son Harry is 11 years old. He is a little person and also has
been
> diagnosed with autism. I am looking to find someone out there who
has
> a similar child. Looking forward to hearing from you.

Michelle,

We are the parents to a 9 year-old son who is dually diagnosed. He
has all of the characteristics identified with the term "autistic"
with a number of other delightfully quirky components that make his
mind what his medical team refers to as Asperger Syndrome (with
Hyperlexia).

Like most Aspie children he has a clear, concise, and perfectly
understandable concrete logic to everything.  Our journey with him
has been fascinating and positive. We truly enjoy his eccentric mind -
- his adult like wisdom, beautiful imagination, superior IQ (in some
areas), logic, blunt honesty and dry sense of humor.

Our biggest challenge is the standardized cookie-cutter approach to
primary education. When instructors suggest that his learning style
and unique perspective is wrong, they suggest that his world (which
is perfectly natural for him) is wrong. This seems like a rather
negative way to frame him. After all, how can his intense interest in
words and his ability to independently break the reading code on his
own (at age six) be considered abnormal? How can his ability to
spontaneously reproduce music on a piano be considered anything other
than a gift? Our son is very sweet, cooperative, quiet and has a
consistently calm disposition. He is knowledgeable about most things
(in comparison with children) but seems reluctant to share with
others outside of our family. We live with a monumental fear that
while we admire, respect and love him unconditionally, the wider
world may not be so understanding.

As a point of reference, Steven Spielberg is a diagnosed (and
admitted) Aspie. Mozart, Einstein and Bill Gates are believed to
possess Asperger traits as well.

There appears to be three dually diagnosed children falling somewhere
on the ASD spectrum, thanks to the watchful eye of my friends Ruth
Ricker and Ellen Fernandez.

Sincerely, Mary (EvC), Bill (Achondroplasia), Billy (Achondroplasia),
Mathew (Aspergers Syndrome & Achondroplasia)

Cute!!!!

I like the Angel one witht he roses....... Thanks for posting this. My
partner is starting to get into his photography, and that blanket is a
great idea. Since we live in New Zealand, we don't have JC Penney
(unfortunately.....I have lived in USA so at least I know what it is!!!)

Caela
Mum to Jeremy, 6, achon, New Zealand

--- In parentsoflittlepeople2@yahoogroups.com, "S. Coe-Mackie"
<scoemackie@y...> wrote:
> I posted new photos of Briana on the photo's section --- Briana M. I
> think is what the folder is entitled.
> And for anyone that likes the roses photo.....you can get that at JC
> Penney....it's a blanket of silk roses -- not uncomfortable for your
> baby to lye on at all!
>
> enjoy!

Yesterday Alexandra celebrated 9 months on this earth. We went to the doctors,
her ear infection seems to have cleared up (thank goodness), her second tooth is
making it's way out (just a week ago, her 1st tooth appeared!). While in her
crib yesterday morning she was squirming all over the place, then got on her
tummy and propped herself up on her arms, moving her legs (rather frog like) and
moved forward the length of the crib toward her Po stuffed animal. She repeated
this a couple of times, as I was in disbelief and kept repositioning her toy. I
didn't say anything to anyone, because I'm a firm believer in something has to
happen a couple of times before I believe it. Well, today while playing on the
floor she saw something she wanted, rolled onto her tummy and moved forward,
grabbed it, rolled onto her back and began looking at the book. I wasn't the
only one who saw it this time, Rick was home for lunch and he saw it too! It
appears that this is a very busy time developmentally speaking for Alexandra and
now for her parents as they really have to make sure everything is babyproofed!
     Well, thanks for letting me share. It is so hard to believe that she's
already 9 months old. Where has time gone? Well, everyday is a new adventure
with Alexandra and I look forward to it! With the passing of Anu Trombino today,
it makes me stop and realize that no accomplishment is too small, we have to
treasure our time here on this earth. Find pleasure in the small things (no pun
intended) and take pleasure in the day to day happenings that may generally seem
mundane.


Barbara Spiegel

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

Michelle -

Although I don't have a child with both achondroplasia and autism, I
DO have a 10 year-old with achondroplasia and Down syndrome and a 17
year-old with high-functioning autism. If you'd like to write, that
would be great.

Pam Graham (otherwise known as "rosieandkatiesmom")

--- In parentsoflittlepeople2@yahoogroups.com, "runningmichelle"
<runningmichelle@y...> wrote:
> My son Harry is 11 years old. He is a little person and also has
been
> diagnosed with autism. I am looking to find someone out there who
has
> a similar child. Looking forward to hearing from you.

Thanks Vita! I do love this group - such a wealth of
information! Thanks for sharing it with me and
everyone else!

Gigi


--- Vita Gagne <rgagne@...> wrote:
> Gigi,
>
> Because airways are made of cartilage, the airway
> can get stronger over
> time as the cartilage strengthens.  It's not about
> the size of the baby,
> but _time_ and the development of the cartilage, in
> other words.  Whether 4
> months is a short time for this to happen in achon
> babies, I don't know,
> but suspect that in Ginnie's case, that she's
> getting close to 12 months
> old has more to do with this improvement than
> anything else.  DD babies
> born with mild tracheobronchomalacia, an
> insufficiency of the airway
> cartilage, can grow out of it in a few months, but
> those DD babies born
> with either the moderate to severe version can take
> 9-24 months to outgrow
> this problem.
>
> Vita
>
>
> At 08:24 PM 5/24/2005, you wrote:
> >Hi Jesi! Yes, hopefully Ginnie will no longer need
> the
> >CPAP. I am surprised that the two sleep studies
> >yielded such different results in such a short
> time.
> >
> >Would you or anyone know if it is possible for a
> baby
> >to outgrow apnea over just a few months, like 4
> >months? I know they do outgrow it as they get
> bigger
> >but she hasnt gotten that much bigger since our
> first
> >sleep study in Jan. So the initial results of thise
> >second test were a bit of a surprise. Still need to
> >wait for the analysis though.
> >
> >Hope all is well Helena! Thanks!
> >
> >Gigi
>
>

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

I posted new photos of Briana on the photo's section --- Briana M. I
think is what the folder is entitled.
And for anyone that likes the roses photo.....you can get that at JC
Penney....it's a blanket of silk roses -- not uncomfortable for your
baby to lye on at all!

enjoy!

My friend who doesn't belong to this site hasa little
boy with achon and they think autism. I will ask her
to write you - I'll give her your yahoo address.
--- runningmichelle <runningmichelle@...> wrote:
> My son Harry is 11 years old. He is a little person
> and also has been
> diagnosed with autism. I am looking to find someone
> out there who has
> a similar child. Looking forward to hearing from
> you.
>
>
>



__________________________________
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Gigi,

Because airways are made of cartilage, the airway can get stronger over
time as the cartilage strengthens.  It's not about the size of the baby,
but _time_ and the development of the cartilage, in other words.  Whether 4
months is a short time for this to happen in achon babies, I don't know,
but suspect that in Ginnie's case, that she's getting close to 12 months
old has more to do with this improvement than anything else.  DD babies
born with mild tracheobronchomalacia, an insufficiency of the airway
cartilage, can grow out of it in a few months, but those DD babies born
with either the moderate to severe version can take 9-24 months to outgrow
this problem.

Vita


At 08:24 PM 5/24/2005, you wrote:
>Hi Jesi! Yes, hopefully Ginnie will no longer need the
>CPAP. I am surprised that the two sleep studies
>yielded such different results in such a short time.
>
>Would you or anyone know if it is possible for a baby
>to outgrow apnea over just a few months, like 4
>months? I know they do outgrow it as they get bigger
>but she hasnt gotten that much bigger since our first
>sleep study in Jan. So the initial results of thise
>second test were a bit of a surprise. Still need to
>wait for the analysis though.
>
>Hope all is well Helena! Thanks!
>
>Gigi

Michelle, I am not in USA, and my son did not need this surgery,
HOWEVER, I have been a member of this group since it started and have
to say from other's experiences on here, make sure that Brayden is
seen by a neurologist who has seen HUNDREDS of LP's.  This is VITALLY
important, as achons do have hydrocephalus and narrowing of the
foramen magnum area in comparison to AH children, but only a small
percentage actually need decompression surgery.
I'm sure Amelia or Trudy can chime in on this and make suggestions for
you. Dr. Ben Carson has notable experience, but there will be others.

Caela
(New Zealand)

--- In parentsoflittlepeople2@yahoogroups.com, "michelle tucker"
<michrx12@y...> wrote:
> Hi, I have posted in the past about my son, Brayden, possibly needing
> decompression of the foramen magnum. We went to see Dr. Jallo today
> and he said Brayden does in fact need the surgery. He apparantly does
> have some type of damage occuring in that area because a couple cysts
> have developed. So once the surgery is over hopefully the cysts will
> go down or go away. I am really scared about this even though I know
> he needs it done. Is he going to be okay? I asked the Dr. if there
> were any residual effects from the surgery and he said no (of course
> the risks of surgery exist). I just can't believe this is happening
> and it breaks my heart to see my child going through all of this. He
> has been through more than I have my enitre life. I guess once we
> leave the hopsital he can resume normal activity but I still am very
> worried. Any advise to settle my nerves?  Thanks, Michelle

gigi,
helena is doing well.  she started sitting up in the end of february
and is now cruising furniture!  nothing like growing by leaps and
bounds!

she is due for another sleep study at the end of this week and we'll
see what they say.  i personally notice that she is not snoring at
all when she falls asleep in my lap which is a huge improvement to
before.  they were able to lower her settings from her sleep study in
july 2004 to november 2004 quite significantly; so from that i think
it is possible for ginnie to outgrow the apnea in a 4 month period.
especially since hers is not as severe as helena's.

take care,
jesi


--- In parentsoflittlepeople2@yahoogroups.com, gigi caluag
<gvc33@y...> wrote:
> Hi Jesi! Yes, hopefully Ginnie will no longer need the
> CPAP. I am surprised that the two sleep studies
> yielded such different results in such a short time.
>
> Would you or anyone know if it is possible for a baby
> to outgrow apnea over just a few months, like 4
> months? I know they do outgrow it as they get bigger
> but she hasnt gotten that much bigger since our first
> sleep study in Jan. So the initial results of thise
> second test were a bit of a surprise. Still need to
> wait for the analysis though.
>
> Hope all is well Helena! Thanks!
>
> Gigi
>
>
>
> --- Jesi <jgmif@y...> wrote:
> > hi gigi,
> > sounds like good news regarding ginnie's sleep
> > apnea.  hopefully it's
> > true and maybe you'll be able to get her off the
> > bi-pap.
> >
> > glad to hear things are going well.
> > take care,
> > jesi
> > (mom to helena, 18 month, achon)
> >
> >
> > --- In parentsoflittlepeople2@yahoogroups.com, gigi
> > caluag
> > <gvc33@y...> wrote:
> > > Hi! My daughter Ginnie (11 month achon) has had
> > two
> > > sleep studies done this year, one here in the
> > > Philippines with a diagnosis of moderate
> > obstructive
> > > sleep apnea and another one just last week in AI
> > > Dupont - results still pending. But the sleep
> > > technicians told me the following morning that she
> > > didnt appear to have any episodes.
> > >
> > > What i have learned about sleep apnea from these
> > two
> > > sleep studies are that its difficult to diagnose
> > sleep
> > > apnea from just looking at your child and how he
> > > breathes. Its possible that you can see your son
> > > breathing regularly but that his airways are
> > already
> > > blocked from when the muscles relax when they're
> > > asleep. Initially I didnt think my daughter had
> > sleep
> > > apnea bec she never stopped breathing in her sleep
> > but
> > > the doctor explained that its possible for the
> > airways
> > > to be blocked and for her to appear to be
> > breathing.
> > > So I think a sleep study would really help to
> > > determine whether your child has apnea. ITs not
> > the
> > > most pleasant experience though as they attach so
> > many
> > > nodes to the scalp and face.
> > >
> > > Hope this helps!
> > >
> > > Gigi (Philippines, Ginnie 11 months, achon; Gracie
> > and
> > > Alfie AH)
> > >
> > >
> > > --- dilauris muhammad <jasiynray@y...> wrote:
> > > > my son is 8 months old and he sticks his tongue
> > out
> > > > most of the time and sometime when he sleeps his
> > > > mouth is open. He has minimal snoring and makes
> > a
> > > > funny whistle sound every once in a while.  Are
> > > > these signs of apnea according to what you have
> > been
> > > > told?
> > > >
> > > > Barbara Spiegel <bspiegel@m...> wrote:Hi
> > > > there,
> > > >     Alexandra saw her ENT today for the ear
> > > > infection she has. He mentioned the fact that
> > she
> > > > sticks her tongue out and her mouth being too
> > small
> > > > to accomodate it. That along with the fact that
> > she
> > > > sleeps on her stomach adds up to the fact that
> > she
> > > > probably has sleep apnea. That threw me for a
> > loop!
> > > > She snores a little, but nothing that I've ever
> > been
> > > > concerned with. Also, don't many achon babies
> > stick
> > > > their tongue out....is there really a corelation
> > > > between these things? All these things don't
> > > > actually add up to apnea, does it?
> > > >
> > > >
> > > > Barbara
> > > >
> > > > [Non-text portions of this message have been
> > > > removed]
> > > >
> > > >
> > > >
> > > > ---------------------------------
> > > > Yahoo! Groups Links
> > > >
> > > >    To visit your group on the web, go to:
> > > >
> > >
> >
> http://groups.yahoo.com/group/parentsoflittlepeople2/
> > > >
> > > >    To unsubscribe from this group, send an email
> > to:
> > > >
> > parentsoflittlepeople2-unsubscribe@yahoogroups.com
> > > >
> > > >    Your use of Yahoo! Groups is subject to the
> > > > Yahoo! Terms of Service.
> > > >
> > > >
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> > __________________________________________________
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> > > > protection around
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> > > >
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> > >
> > >
> > >
> > > __________________________________
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Hi Jesi! Yes, hopefully Ginnie will no longer need the
CPAP. I am surprised that the two sleep studies
yielded such different results in such a short time.

Would you or anyone know if it is possible for a baby
to outgrow apnea over just a few months, like 4
months? I know they do outgrow it as they get bigger
but she hasnt gotten that much bigger since our first
sleep study in Jan. So the initial results of thise
second test were a bit of a surprise. Still need to
wait for the analysis though.

Hope all is well Helena! Thanks!

Gigi



--- Jesi <jgmif@...> wrote:
> hi gigi,
> sounds like good news regarding ginnie's sleep
> apnea.  hopefully it's
> true and maybe you'll be able to get her off the
> bi-pap.
>
> glad to hear things are going well.
> take care,
> jesi
> (mom to helena, 18 month, achon)
>
>
> --- In parentsoflittlepeople2@yahoogroups.com, gigi
> caluag
> <gvc33@y...> wrote:
> > Hi! My daughter Ginnie (11 month achon) has had
> two
> > sleep studies done this year, one here in the
> > Philippines with a diagnosis of moderate
> obstructive
> > sleep apnea and another one just last week in AI
> > Dupont - results still pending. But the sleep
> > technicians told me the following morning that she
> > didnt appear to have any episodes.
> >
> > What i have learned about sleep apnea from these
> two
> > sleep studies are that its difficult to diagnose
> sleep
> > apnea from just looking at your child and how he
> > breathes. Its possible that you can see your son
> > breathing regularly but that his airways are
> already
> > blocked from when the muscles relax when they're
> > asleep. Initially I didnt think my daughter had
> sleep
> > apnea bec she never stopped breathing in her sleep
> but
> > the doctor explained that its possible for the
> airways
> > to be blocked and for her to appear to be
> breathing.
> > So I think a sleep study would really help to
> > determine whether your child has apnea. ITs not
> the
> > most pleasant experience though as they attach so
> many
> > nodes to the scalp and face.
> >
> > Hope this helps!
> >
> > Gigi (Philippines, Ginnie 11 months, achon; Gracie
> and
> > Alfie AH)
> >
> >
> > --- dilauris muhammad <jasiynray@y...> wrote:
> > > my son is 8 months old and he sticks his tongue
> out
> > > most of the time and sometime when he sleeps his
> > > mouth is open. He has minimal snoring and makes
> a
> > > funny whistle sound every once in a while.  Are
> > > these signs of apnea according to what you have
> been
> > > told?
> > >
> > > Barbara Spiegel <bspiegel@m...> wrote:Hi
> > > there,
> > >     Alexandra saw her ENT today for the ear
> > > infection she has. He mentioned the fact that
> she
> > > sticks her tongue out and her mouth being too
> small
> > > to accomodate it. That along with the fact that
> she
> > > sleeps on her stomach adds up to the fact that
> she
> > > probably has sleep apnea. That threw me for a
> loop!
> > > She snores a little, but nothing that I've ever
> been
> > > concerned with. Also, don't many achon babies
> stick
> > > their tongue out....is there really a corelation
> > > between these things? All these things don't
> > > actually add up to apnea, does it?
> > >
> > >
> > > Barbara
> > >
> > > [Non-text portions of this message have been
> > > removed]
> > >
> > >
> > >
> > > ---------------------------------
> > > Yahoo! Groups Links
> > >
> > >    To visit your group on the web, go to:
> > >
> >
>
http://groups.yahoo.com/group/parentsoflittlepeople2/
> > >
> > >    To unsubscribe from this group, send an email
> to:
> > >
> parentsoflittlepeople2-unsubscribe@yahoogroups.com
> > >
> > >    Your use of Yahoo! Groups is subject to the
> > > Yahoo! Terms of Service.
> > >
> > >
> > >
> > >
> __________________________________________________
> > > Do You Yahoo!?
> > > Tired of spam?  Yahoo! Mail has the best spam
> > > protection around
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> > >
> > > [Non-text portions of this message have been
> > > removed]
> > >
> > >
> >
> >
> >
> > __________________________________
> > Do you Yahoo!?
> > Yahoo! Small Business - Try our new Resources site
> > http://smallbusiness.yahoo.com/resources/
>
>
>



__________________________________
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hi gigi,
sounds like good news regarding ginnie's sleep apnea.  hopefully it's
true and maybe you'll be able to get her off the bi-pap.

glad to hear things are going well.
take care,
jesi
(mom to helena, 18 month, achon)


--- In parentsoflittlepeople2@yahoogroups.com, gigi caluag
<gvc33@y...> wrote:
> Hi! My daughter Ginnie (11 month achon) has had two
> sleep studies done this year, one here in the
> Philippines with a diagnosis of moderate obstructive
> sleep apnea and another one just last week in AI
> Dupont - results still pending. But the sleep
> technicians told me the following morning that she
> didnt appear to have any episodes.
>
> What i have learned about sleep apnea from these two
> sleep studies are that its difficult to diagnose sleep
> apnea from just looking at your child and how he
> breathes. Its possible that you can see your son
> breathing regularly but that his airways are already
> blocked from when the muscles relax when they're
> asleep. Initially I didnt think my daughter had sleep
> apnea bec she never stopped breathing in her sleep but
> the doctor explained that its possible for the airways
> to be blocked and for her to appear to be breathing.
> So I think a sleep study would really help to
> determine whether your child has apnea. ITs not the
> most pleasant experience though as they attach so many
> nodes to the scalp and face.
>
> Hope this helps!
>
> Gigi (Philippines, Ginnie 11 months, achon; Gracie and
> Alfie AH)
>
>
> --- dilauris muhammad <jasiynray@y...> wrote:
> > my son is 8 months old and he sticks his tongue out
> > most of the time and sometime when he sleeps his
> > mouth is open. He has minimal snoring and makes a
> > funny whistle sound every once in a while.  Are
> > these signs of apnea according to what you have been
> > told?
> >
> > Barbara Spiegel <bspiegel@m...> wrote:Hi
> > there,
> >     Alexandra saw her ENT today for the ear
> > infection she has. He mentioned the fact that she
> > sticks her tongue out and her mouth being too small
> > to accomodate it. That along with the fact that she
> > sleeps on her stomach adds up to the fact that she
> > probably has sleep apnea. That threw me for a loop!
> > She snores a little, but nothing that I've ever been
> > concerned with. Also, don't many achon babies stick
> > their tongue out....is there really a corelation
> > between these things? All these things don't
> > actually add up to apnea, does it?
> >
> >
> > Barbara
> >
> > [Non-text portions of this message have been
> > removed]
> >
> >
> >
> > ---------------------------------
> > Yahoo! Groups Links
> >
> >    To visit your group on the web, go to:
> >
> http://groups.yahoo.com/group/parentsoflittlepeople2/
> >
> >    To unsubscribe from this group, send an email to:
> > parentsoflittlepeople2-unsubscribe@yahoogroups.com
> >
> >    Your use of Yahoo! Groups is subject to the
> > Yahoo! Terms of Service.
> >
> >
> >
> > __________________________________________________
> > Do You Yahoo!?
> > Tired of spam?  Yahoo! Mail has the best spam
> > protection around
> > http://mail.yahoo.com
> >
> > [Non-text portions of this message have been
> > removed]
> >
> >
>
>
>
> __________________________________
> Do you Yahoo!?
> Yahoo! Small Business - Try our new Resources site
> http://smallbusiness.yahoo.com/resources/

Ricky didn't have to go through that surgery, but I just wanted to tell you
that our thoughts and prayers are with you.  When is the surgery?


_______________

Janet
Lablvr655@...
"Don't judge each day by the harvest  you reap,
but by the seeds you  plant."


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

My son Harry is 11 years old. He is a little person and also has been
diagnosed with autism. I am looking to find someone out there who has
a similar child. Looking forward to hearing from you.

He is so cute!  Happy birthday to Danny!

Suzanne

Beth Ann Rose wrote:

> Hi all,
>
> My son Daniel (Danny) is 3 today.  I posted some latest pictures of my
> angels.
>
> Also a question, I remember reading a while ago about a guy that makes
> bikes for Little People and I wanted to know if he still makes them.
>
> Thanks.
>
> Beth
> mom to Kelli (5 AH), Danny (3 Achon), and Lizzy (5 months AH)
>
>
>
>
>
>
> Yahoo! Groups Links
>
>
>
>
>
>
>

Hi, Mike,

First, I think this is a very personal decision, and what might be the
right choice for someone, might not be good for others.  I can only tell
you why we did not do it.  I asked my best friend, that is a high risk
OB, as well as my own high risk OB...and they both said not to do it for
these reasons:  it is expensive, and you really don't know if you'll
ever be able to use it, new treatments come about all the time,
etc...etc....But, I have a friend that I teach with that did it, and is
very happy about it because she feels like she has "insurance" in case
she does need it.

I don't know if this helps or not..just thought I'd tell you what I know.

Suzanne

mikekrajewski2000 wrote:

> As those of you that have been following the "Short Femur Ultrasound"
> thread know, my wife and I are due in a little over a month.  The
> latest ultrasound showed a short femur, but it is unknown what it
> exactly means.  All of the advice, stories, and support we have
> received so far has been a great help.  I thought I would ask another
> question.
>
> Is it worthwhile to save the cord blood?  I'm not sure of any of the
> details surrounding doing this, nor do I know about the cost associated
> with it.  I hear it mentioned from time to time in the media, but am
> unsure of the purpose of doing so.  Are there medical benefits of doing
> this?  Are there potential benefits in the future that suggests doing
> this?
>
> Does anyone in the group have any experience with this?
>
> Thanks once again,
> Mike
>
>
>
>
>
>
> Yahoo! Groups Links
>
>
>
>
>
>
>

Hi, I have posted in the past about my son, Brayden, possibly needing
decompression of the foramen magnum. We went to see Dr. Jallo today
and he said Brayden does in fact need the surgery. He apparantly does
have some type of damage occuring in that area because a couple cysts
have developed. So once the surgery is over hopefully the cysts will
go down or go away. I am really scared about this even though I know
he needs it done. Is he going to be okay? I asked the Dr. if there
were any residual effects from the surgery and he said no (of course
the risks of surgery exist). I just can't believe this is happening
and it breaks my heart to see my child going through all of this. He
has been through more than I have my enitre life. I guess once we
leave the hopsital he can resume normal activity but I still am very
worried. Any advise to settle my nerves?  Thanks, Michelle

As those of you that have been following the "Short Femur Ultrasound"
thread know, my wife and I are due in a little over a month.  The
latest ultrasound showed a short femur, but it is unknown what it
exactly means.  All of the advice, stories, and support we have
received so far has been a great help.  I thought I would ask another
question.

Is it worthwhile to save the cord blood?  I'm not sure of any of the
details surrounding doing this, nor do I know about the cost associated
with it.  I hear it mentioned from time to time in the media, but am
unsure of the purpose of doing so.  Are there medical benefits of doing
this?  Are there potential benefits in the future that suggests doing
this?

Does anyone in the group have any experience with this?

Thanks once again,
Mike

Hi all,

My son Daniel (Danny) is 3 today.  I posted some latest pictures of my
angels.

Also a question, I remember reading a while ago about a guy that makes
bikes for Little People and I wanted to know if he still makes them.

Thanks.

Beth
mom to Kelli (5 AH), Danny (3 Achon), and Lizzy (5 months AH)

My son, who has Achondroplasia like myself, was exactly 22 months when he took
his first independent steps.But once he realized he could do it there was no
stopping him.
He was born with Kyphosis and there was a great deal of home therapy and he wore
a back brace for a little while to help build his muscle strength.I too didn't
think he would ever walk.He used the push toys ALOT! But I was told he would be
fine and he would walk when ready.
I needed to be patient..............Today he's almost 8 and he plays softball
and is in Karate.


Zenthia Eno <lady_zenthia_23@...> wrote:I have an ap child, and she was a
very late starter...My mother tells me I was as well, with the theory that 
first ones develope slow, seconds + develope faster becuase their being chased
by the firsts ;) I do no tthink my daughter started walking till past 2 years
old :)

Zenthia


Rickerruth@... wrote:
I'm a middle-aged achon who first walked independently within days of my
second birthday.  I pushed a cardboard box around and then my parents took the
hint and got a doll carriage (which doesn't sound as sturdy to me as a cardboard
box)?  Some achons walk at one year and some not until after their 2nd
birthday and I don't think there's any evidence that it means anything (future
development) if you are in one camp or the other.  Knock wood I'm still pretty
agile
these days (not an athlete but mobile and healthy).

Sounds as if Brayden is working up to it, and sure it's really easy for the
rest of us to say, "Don't worry," but he'll get there.  He sounds like a
motivated guy and appreciates the efforts of his doting family.


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



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



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

hi,
i will try to get in all i have to say, but i have a newborn....so i
might not get to finish my thoughts...
anyway, i will give you a run down of my experience.
i have achondroplasia myself, so that made my preg. hi risk. so i had
to see a perinatologist once a month and have level 2 ultrasounds
once a month.
at 14 weeks i had an ultrascreen test. this was a test my hospital
did instead of the afp. it is a test for downs. anyway, part of the
test is an ultrasound, and something they look at is the nasal bone.
they did not see the nasal bone....at the 20 week ultrasound they
still did not see a nasal bone. the dumb dr. comes back with all
these stats about my risks for downs etc. i was so confused and
upset. my ultrascreen test came back with really good results and
according to that my chances for downs was like 1 in a 100thousand.
so i was so confused as to why the dr was even talking about downs,
when the baby had a 50 % chance of having achon. anyway, a week later
i called a dr who was above him at the hospital, and he said
considering my achon, and considering how good the test results were
for downs, it probably meant the baby had achon. or the baby was
fine. some babies nasal bones don't show up in
ultrasound.....however....they were never sure they saw the nasal
bone even at my last test.
as for the bone measurements. the long bones were only slightly
lagging behind for most of the pregnancy. they said it could mean
achon. or it could just be my short italian heritage.
somewhere at around 30 weeks....one perinatologist thought he saw the
trident hand (an achondroplasia characteristic). he was the first to
publish documentation of that via ultrasound...and it is very hard to
spot via ultrasound. (so i don't know if your dr would be able to
spot  it)
it wasn't until my final ultrasound at 36 weeks that the measurements
really dropped off ...the head was larger and the long bones were
lagging way behind.  i was prepared for this though. the drs. said
that with achondroplasia, many times it doesn't show up in ultrasound
til the very end of a pregnancy.
again, the drs. were never sure of anything until the very end. and
then they still couldn't say 100 percent...because ultrasounds are
never 100 percent.
as for everyone's health. i had a healthy pregnancy. i had a
scheduled c-section at 38 1/2 weeks. because of my achon.- i needed a
c-section. although i think it is better for the achon baby as well.
they were worried about the baby and told me he might have to go to
the special care nursery. but when he was born the neonatologist
looked at him and said he was healthy and he could go to the regular
nursery. his apgar scores were 9--9. i was so happy. you can't get
much higher on those scores...he stayed in our room the whole
hospital stay and did very well. he is now almost 8 weeks old and
doing well.

i hope this helps. this is only my experience....i am apologize for
the poor sentence structure....but i really don't have time to proof
read.
keep us posted.

stephani
mom to evan
--- In parentsoflittlepeople2@yahoogroups.com, "mikekrajewski2000"
<mikekrajewski2000@y...> wrote:
> My wife and I had our final scheduled ultrasound on Friday 5/13.
We
> received a call from our doctor Monday morning saying there was
some
> concern with the development of the baby's femur and he set up an
> appointment with a specialist yesterday.
>
> Our appointment yesterday confirmed the short femur measurement and
> shorter than expected arm measurements, but the doctor did not want
> to speculate as to the meaning of it.  He said that it could mean
one
> of many things, or possibly nothing at all, and didn't want to jump
> to any conclusions yet.  He did mention that it could be an
indicator
> of a dwarfism, but without doing more invasive tests he could not
be
> certain.  The due date of the baby is late June, so he said that a
> lot of the diagnosis and checks will come after the baby is born
and
> he has a chance to look at it outside the womb.
>
> Naturally, my wife and I are concerned about this development in
the
> pregnancy so I am doing some research.  I am wondering what kind of
> experiences parents of little people had during pregnancy and what,
> if anything, my wife and I should be concerned about or be asking
the
> doctor.  Was shorter than expected limb measurements one of the
> indicators of your pregnancy?
>
> Any help, words of encouragement, or advice would greatly be
> appreciated.
>
> Thank you,
>
> Mike