Hi Shannon,
I felt so sad to know that your son was sick again; I
hope that he is better now. Saul was sick all the time
in the first year, but we also learn that he has
allergy to dust and other foods and we are giving him
a medicine that control his allergies and he is so
much better, he also receive like a vaccine that make
his defenses stronger and it work, but is no just for
Achon children my daughter suffers the same and she is
average.
About the speech therapy, he just finished the
evaluation and it seems the problem results from the
time that he couldn’t hear because the liquid trapped
in his ears, and he also has problems with social
skills so the therapy will help him in that area too.

Saul was born vaginaly 3 weeks before my due date,
because his head was big, He was 7 pounds and 18.5
inches long, so I was happy that he was born at that
time, (thinking about pushing a bigger baby).
We receive great help from his HMO Kaiser Permanente,
we see all the doctors here in San Diego and they even
send him to Cedar Sinai last year.

I am so happy to share this with you, and believe me
soon you will be better.
Susana Amezcua.

--- SHANNON OSBORNE <SOJO82001@...> wrote:
>
> --- 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
>
=== message truncated ===


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