Mon, 03 Mar 2008
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Lily's Life Journey With Short Gut Syndrome
Hi my name is Lily Minasian,I'm one of
triplets.I'm baby A my brother is baby B and
Cheyanne is baby C.We are 18 mths old.I also have
2 older sisters Victoria 19 and Anjel 10...Two
brothers Steven 18 and Daniel 19...As you can
tell i did not say Andre that is because he was
born sick like me and died at the young age of 8
mths....I miss him very much we went through
everything together...The story you are about to
read is about me and my journey with my illnesses
that i still deal with....We were born 3 mths
early my sister and i weighted 2 lbs and 9
ozs...My brother in at 2 lbs 5 ozs...Mommy and
Daddy know Ander was going to be sick so they
were ready for that....They were told i was ok
just little....So they tried to feed me for a few
days.I did not do so good.Thats when they relized
somthing was very wrong.They sent me for this
test called an upper G.I.This is where they put
this dye in my tummy with a ng tube.It was
supposed to move from my tummy into my intestines
and out the bottom,it did not it went in my tummy
and stayed.Thats when they found that i had what
they call Congenital Pyloric Stenosis and
Malrotation....That is where the opening of my
tummy did not form open and i had a blockage in
my small intestines.They had to go in and make
the opening of my tummy and remove some of my
small intestines.That left me with a stoma and
only could eat by my I.V called central line...Ok
let me tell you what a stoma and central line
are..A stoma is where they take a part of your
small and large bowel and bring it to the outside
so you have to make stool in a bag....A central
line that is my life line that is how my body
gets is food so i dont starve to death...I can
not have anything to eat or drink...Ok so back on
to my illness...:}My first surgry was when i was
only 7 days old..They tried to feed me again for
awhile I still was not absorbing anything so they
thought that if they could reconnect me i would
start to absorb things they did that one in jan
2007 and they
found more died bowel and had to remove it so I
was left with very little bowel.Thats how i ended
up with Short Gut Syndrome..Still did not
work....They did a biopsy on my bowels and found
i had no villi that is why i could not eat...The
drs at the hospital i was born at could not help
me any more so they sent me and Andre to
Childrens of dallas..They ran all this test on
me...Started to give me meds after meds and
nothing worked.They even tried to feed me again
and thats when they did another biopsy on me and
found out i had no function in any of my bowel.So
they gave me more meds to try to wake it up and
it did not work..It just made things worst.With
all this i ended up losing my large bowel to.At
first the dr's tried to tell my mom and dad there
was nothing more they could do for me...So Mommy
and Daddy ask to find someone to help fix
me...And they did...this Dr came and looked at me
and all my testes and said he could help me.He
said i need a liver a small bowel and a large
bowel trasplant..Mom and Dad was very happy that
someone was going to help me..But mom and dad
need a 2nd opinion not because they did not trust
the Dr's at childrens they just want to make
sure a trasplant was the only thing going to save
me.So mom and me went to Pittsburgh and they ran
the same test that dallas did and said i do need
a small bowel trasplant so I'm now on the waiting
list for a small bowel trasplant in
Pittsburgh.Heres the thing mom and dad and I need
help with the expenses that my trasplant is going
to incure they have to live up there for no less
then 6 mths somy dad is going to miss a lote of
work and can not afford to...That is why i have
started this web page so anybody who is willing
to help My mom and dad started a trust fund for
me and my family for any expenses that we will
need help with...If you would like to donate
anything you can go to any Bank of America and
ask for the Lily Minasiasn trust fund.....
please forward this to anybody you think would be
interested in learning about Lily or wants to help
Thank Ya'll and my God
bless you for even taken time out of your day to
read and learn about lily
Lily Minasian
Posted 23:47
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8 comments
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wow
wow i cant think about how much truble you gone
through
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Dear Lily,
we just wanted to say we love you so much. We
will try everything we can to help you and your
mommy and daddy in raising funds so you can be
healthy. You are always in our thoughts and
prayers.
Love, your Uncle Vrej and Aunt Anke
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Lily, I love you. This is Grandma Anjil. I
love you and am praying for you night and day.
All of us are praying to help you.
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Many Prayers for You and Your Family
Hi Lily - I am Anita a friend of your Grandma
Anjil. She and I sing in the church choir
together. I love your Grandma Anjil very much so
therefore I love you and your family very much
too. I pray to God the Great Physician that He
will guide all of the drs and nurses in
Pittsburgh to help you get completely well. I
also will forward your story to all of Anjil's
friends in the church choir. Many of us have
experienced similar challenges with our own
families and know how tough it can be to face
these problems every day. But I tell you this --
God can do anything. So, just take your journey
one day at a time, and look to God to guide you
and your parents steps each day. Don't be afraid.
God provides everything you need if you depend on
Him.
I look forward to reading updates on you and your
family. And I will share your story with friends
and family. Hugs and hugs - Anita in Flower Mound
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lilys update
lily is still in the hospital they are trying
this new med on her it has been a week and it
has not worked..we will know on mon what happens
next....i will keep ya'll posted....we are also
having a fundrasier yard sale on the weekend of
4,5,and 6th...if you need to know where is going
to been you can call me @ 469-432-
2157 thank
you
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meds
Lily is still in the hospital they want to do 4
weeks of this med...So she will not be home 4 2
or more weeks...So far it looks like it is
working so everyone keep praying for
her...................Thank you
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name change
the name you have to ask for at the bank is lily
mari minasian,.......thank you7288
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update
Lily is home and doing well....They took her off
all meds now we are just wating for the phone
call that a organ is ready pray it will be
soon .....................thank ya'll for all
your surpport
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