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.
Comments
Sophia. I love you. I'm your uncle and as you probably already know you are apart of an amazing family. Your mom is amongst one of the strongest women I know. Your sister is only eight but yet she seems more mature than myself! Your brother is undescribable (in an amazing way) he is always making me smile and laugh. I will always be there for you as your crazy uncle. Can't wait to see the great women you will become.
Love your crazy uncle Isaac. <3
DEAR SOPHIA every time you have a set back it breaks my heart but then I see your smile and it heals again.I LOVE YOU VERY MUCH BUMPA
i met sophia and her mom in the nicu at children's. they are both such an insperation to me. karla has the best attitude i have ever seen in a ill child. sophia is blessed to have her and she will be a great little girl because she has such a great roll model in her mom. she would always tell me not to let your childs illness define them or hold them back and this is something i will keep for the rest of my life.
SOPHIA your life so far has been hard but you face it so well,as your mom,dad and sibs do.everytime there is a set back it breaks my heaart but when i see you smile it heals it.I LOVE YOU VERY MUCH BUMPA
this is a amazing little girl, as is her family, the strength and possitive attitude you show is a testament to your faith and strength. One day she will be a amazing lady. Our prayers are with you.
Yeah for such a special girl. When I look at her I see how special her parents are to take such good care of her!
What a beautiful story Karla. Your courage and strength will see you through the difficult times. Sophia will be in our prayers. She's a tough little gal and the good Lord will be watching over her and your family. Thanks for keeping us informed.
Love ya, Aunt Thelma and Aunt Donna
A beautiful story. Sophia is blessed to have a fantastic mother & father that tackle her condition with such a wonderful outlook.
We met Sophia and her mom while my daughter and I was also in the NICU at Children's. Sophia is an amazing little girl and I hope that she gets all the help and research that she needs to help heal her. Love Terri & Adalynne
What a cute little girl! I love her little ducky outfit :)
I wish you all the best with her and an excellent future ahead!