--- Susana Amezcua <sussy_amezcua@...> wrote:
> Hi Shannon I am glad that you write, I know that a
> lot
> of families in the group can relate with your story.
> My son Saul is going to be 3 next February, and we
> are
> also average parents too, we also have a 4 year old
> girl (average).
> Saul was born when I was 26 years old, I was in my
> 32
> week of pregnancy when I had a routine ultra sound
> and
> the doctor told me that my baby had achondrolplasia.
> And the rest is almost that same that you experience
> with your son, even the ear problems and a lot of
> infections.
> He is also taking speech therapy, and he is
> attending
> a Montessori school with average size children, he
> loves it!
> I am glad to tell you that they get stronger when
> they
> grow up, Saul don?t get sick much and things do get
> better and most of all happier.
> Susana Amezcua.
>

Hi Susana,
Thank you so much for writing. I feel so alone
sometimes, and it helps to know that other parents can
relate to what we have been through. I am so glad to
hear that your son is now doing better. I would have
wrote sooner, but Ethan was just released from the
hospital this past Sunday. He was in there for a week
with pnemonia and reactive airway disease. I took him
in today for blood work. They want to see if there is
another contributing factor in Ethan's ongoing
sickness. Ethan stays well for maybe a week and than
is sick all over again. I feel so helpless. Was your
son sick all the time? I hate it for Ethan, because
he doesn't even know what it feels like to be well. I
understand that your son is taking speech therapy.
Ethan is as well. He has extremly low tone in his
mounth so they have been working with him for about 7
months now. If you don't mind me asking, what is your
son's speech therapy for? It was also intresting to
find out that your son's dwarfism was found by
ultrasound. My doctor who delivered Ethan said it
would have been impossible to detect. I had my last
ultrasound at 27 weeks. The only reason my husband and
I would have liked to know befor he was born, would be
so we could be prepared. It was so scary learning
about everything after he was born. It would have been
helpful to learn this befor hand. Was your son born by
c-section or vaginaly? I could be wrong, but it was
my understanding that these children need to be
delivered by c-section, because of their foreman
magnam. Ethan was breech so he was delivered by
c-section. Thank you again for writing and I hope you
and your family had a wonderful Christmas.... Please
write if you get the chance.

Shannon
> --- "sojo82001 <SOJO82001@...>"
> <SOJO82001@...> wrote:
> > HI! MY NAME IS SHANNON AND LIVE IN SHERWOOD,
> > ARKANSAS. I AM 25 YEARS
> > OLD. I HAVE A BEAUTIFULL LITTLE BOY ETHAN, WHO WAS
> > BORN WITH
> > ACHONDROPLASIA 1-7-2002. MY HUSBAND AND I ARE BOTH
> > AVERAGE HEIGHT SO
> > IT CAME AS A BIG SUPRISE TO BE TOLD THE DAY AFTER
> > HIS BIRTH THAT HE
> > MIGHT HAVE A TYPE OF DWARFISM. HIS PEDIATRICIAN
> WAS
> > THE ONE TO PICK
> > THIS UP. HE SUSPECTED ETHAN HAD ACHONDROPLASIA
> WHICH
> > WE HAD NEVER
> > HEARD OF BEFORE. HE BROUGHT A BOOK TO THE HOSPITAL
> > WRITTEN BY DR.
> > PAULI IN WISCONSIN, WHICH SHOWED PICTURES OF
> > CHILDREN WITH
> > ACHONDROPLASIA. ETHAN'S LITTLE HANDS LOOKED JUST
> > LIKE THE PICTURE IN
> > THE BOOK. HE ALSO WENT THROUGHT SEVERAL X-RAYS
> > WHICH WERE SENT TO
> > CHILDRENS HOSPITAL TO DETERMINE IN FACT, THAT
> ETHAN
> > HAD
> > ACHONDROPLASIA. ETHAN WAS BORN ON A MONDAY AND
> > EVERYTHING WAS
> > CONFIRMED THAT WEDNESDAY ABOUT HIS CONDITION. I
> > THINK THIS WAS THE
> > FIRST TIME I EVER SAW MY HUSBAND CRY. HE LITERLY
> > FELL TO THE FLOOR. WE
> > LOVED ETHAN SO MUCH, BUT WE WERE VERY CONFUSSED
> AND
> > SCARED AT WHAT
> > THIS MEANT. SOON AFTER WE WERE TOLD, MY FATHER
> > CONTACTED DR.PAULI AT
> > THE CLINICAL GENETICS CENTER IN WISCONSIN. DR.
> > PAULI SENT A LARGE
> > PACKET OF INFORMATION TO US EXPLANING EVERYTHING
> > ABOUT ETHAN'S
> > DWARFISM (HE IS ETHAN'S GENETISIS) THE HOSPITAL
> > COULD NOT GIVE US ANY
> > INFORMATION. SUPRISINGLY, THEY HAD NO KNOWLEDGE OF
> > IT. I LOOK AT ETHAN
> > AS A TOTAL BLESSING. I FEEL SO BLESSED THAT GOD
> > CHOSE ME TO BE THIS
> > PRECIOUS LITTLE BOY'S MOTHER. HE HAS TOTALLY
> CHANGED
> > NOT ONLY MYSELF,
> > BUT MY ENTIRE FAMILY. I HEAR ALL THE TIME FROM
> > DIFFERENT PEOPLE
> > "MAYBE IF YOU PRAY, ETHAN MIGHT GROW UP TO BE
> TALL".
> > TO ME THIS IS SO
> > IGNORANT. I AM VERY PROUD OF MY SON AND THE PERSON
> > THAT HE IS AND I
> > WANT HIM TO HAVE THE SAME ATTITUDE. THE ONLY THING
> > THAT I DO PRAY
> > ABOUT IS HIS HEALTH. ETHAN HAS BEEN SO SICK. HE
> HAS
> > BEEN IN THE
> > HOSPITAL 3 TIMES, THE LAST TIME BEING JUST A FEW
> > WEEKS AGO FOR
> > PNEMONIA. HE WAS IN FOR 6 DAYS. ETHAN HAS HAD
> RSV,
> > PNEMONIA 3 TIMES,
> > BRONCHIOLITS SO MANY TIMES I LOST COUNT, AND
> > NUMEROUSE EAR INFECTIONS.
> > ETHAN ALSO HAD SIGNIFICANT APNEA WHEN HE WAS
> > SEVERAL MONTHS OLD.
> > EHTAN ALSO HAS KYPHOSIS. HE IS CURRENTLY RECEIVING
> > THE SYNIGUS SHOT
> > ONCE A MONTH FOR 6 MONTHS FOR RSV. ETHAN TAKES A
> > STERIOD UPDRAFT 2 X
> > DAILY TO PREVENT HIS WHEEZING. HE ALSO TAKES
> XOPENEX
> > WHEN NEEDED WHEN
> > HE STARTS LABORING TO BREATH. I HAVE RECENTLY QUIT
> > MY JOB TO STAY AT
> > HOME WITH ETHAN. HE WAS ATTENDING HELPING HANDS
> > CHILDRENS CENTER,
> > WHERE HE RECIEVED PT, OT, AND SPEECH THERAPY. I
> > KNOW THEY SAY THAT
> > THERAPY DOES NOT HELP, BUT I HONESTLY DO BELIEVE
> IT
> > HELPED ETHAN.
> > I WASN'T EXPECTING HIM TO SIT ANY FASTER, OR CRAWL
> > ANY SOONER, BUT IT
> > DID SEEM TO HAVE HELPED ON HIS GROSS MOTOR SKILLS.
>
> > I PROVIDED THE
> > CENTER WITH INFORMATION ABOUT HIS CONDITION, AND
> > SEVERAL OF THE
> > THERAPIST'S HAD DEALT WITH CHILDREN WITH
> > ACHONDROPLASIA BEFORE. ETHAN
> > GOES 3 DAYS A WEEK NOW, FOR ONE HOUR OF THERAPY.
> THE
> > REASON I AM
> > WRITING THIS IS BECAUSE I WOULD LOVE TO TALK WITH
> > OTHER PARENTS WITH
> > ACHON CHILDREN TO DISCUSS OUR FEARS AND JOYS
> > TOGETHER. I WOULD ALSO
> > LIKE TO ENCOURAGE AND HELP NEW PARENTS THAT HAVE
> > CHILDREN WITH
> > ACHONDROPLASIA.ALSO, ETHAN HAS VERY LOW TONE IN
> HIS
> > MOUTH. HE
> > ASPIRATES ON ANYTHING THAT IS TO THIN OR TO THICK?
> I
> > WAS TOLD THAT LOW
> > TONE IN THE MOUTH WAS NOT PART OF HIS
> > ACHONDROPLASIA. PLEASE ADIVSE
> > IF ANY OF YOUR CHILDREN EXPRERIENCE THIS.
> > I APOLOGIZE FOR THIS BEING SOOOOOO LONG.
> >
> > VERY GRATEFUL,
> > SHANNON
> >
> >
> >
>
>
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