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.

--- "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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