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Lily Minasian
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Mon, 03 Mar 2008
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

8 comments


wow
wow i cant think about how much truble you gone through
Posted by kristy



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
Posted by vrej &anke



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.


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
Posted by Anita Hale


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
Posted by lilys mom


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
Posted by lilys mom


name change
the name you have to ask for at the bank is lily mari minasian,.......thank you7288
Posted by lilys mom


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
Posted by lilys mom


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