SOPHIA'S PERSONAL STORY

February 15, 2016 Pediatric FGIMDs
Country : USA Satate : Wisconsin City : Milwaukee 

Sophia Grace Dummer was born on May 20, 2011 at 7:00 AM, at 32 weeks gestation.  She was baby B in a set of triplets.  At 2 days old she was diagnosed with Ileal Atresia and had her first surgery.  We were then told that she acquired strictures and would need another surgery.  Her third surgery was preformed at 3 months and she has a stoma and a fistula.  And 10 days after that she needed a yet another surgery.  At this point we decided to transfer to Children’s Hospital in Milwaukee, WI.
 
Once there two additional surgeries were preformed.  That totals 6 surgeries in 6 months, an almost unheard of amount for intestinal surgery.  Her surgeon at Children’s found rare conditions were she is allergic to surgical sutures, and pseudo-obstruction disorder.  Without finding their staff I have no idea where our journey would have led us.  Now she has a GJ tube and a Broviac central line.  She gets about 1/4th of her food from her J-tube and we drain her G at night.  She is still TPN dependent.
 
We now start the journey of healing and learning how to live with this condition.  We know that it will be a long one, but with a great support system it is a journey that we are ready to take.  We are very proactive and when we got her diagnosis I was amazed at how little is known about her condition.  Sophia has the strength to fight whatever comes her way, now research is what is needed to help her.
 
People come up to us on a daily basis and say how sorry for us they are.  When they look at Sophia they may see a sick little girl with cords and pumps.   Yes, we do have daily struggles and would do anything to make her better.  As her mom, I feel privileged to get to go on the journey of life with her, no matter where that may lead.   When I look at Sophia, I see an amazing little girl that has already taught me so much.  I know that one day she will be a great woman, who will change this world for the better, just because she is in it. 

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