My husband and I have four Children. Our fourth is a little boy named Case Daniel. This is his story and the lessons he's taught through his differences.
Shadow.
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The shadows of crib rails while sweet Case sleeps. His naps have been lovely and peaceful lately unlike his nights. They've been restless and littered with retching/vomiting. Sleep sweet in the shadows, baby.
Let me tell you all about the boy that is the inspiration behind A Very Special Family. Before Case was born we knew he was sick. During the routine "gender scan" ultrasound they found a "spot on his kidney and a spot on his heart." They referred us to a high risk OB about an hour away from our home. In order to not drive myself crazy, I decided to tell myself it was nothing in the days counting up to the appointment. It was something. It was a lot of things. I'll never forget that day, the day I heard the laundry list of birth defects, health problems and complications my sweet baby had. I remember my world starting to blur. That day, in the OB office right after I was told our baby was sick I don’t remember much but I remember hearing the word “Grace”. It was clear and unmistakable. At the time, I thought the baby was a girl and that was to be her middle name. Once we got home from that appointment, I looked up the word Grace. Blessing and
Case is our fourth child. He has 3 sisters. At 22 weeks pregnant I had a routine ultrasound. The tech seemed calm, ordinary. She said we were having another girl. We named her Parker. "She" was healthy. Typical. Fine. A week or two after that "normal" ultrasound we got a call. There was a spot on our "baby girl's" heart and one on "her" kidney. Not a big deal. At about 25 weeks of Pregnancy, We had a second level sonogram about an hour away from our home. I was told our baby would be different. Very different. It's limbs were way behind in growth. It had heart problems, kidney problems, and was small. Very small. The doctor strongly suspected Down syndrome or Trisomy. He did an amnio. I cried. He told me this was not my fault. I was doing everything I could. The baby was just made different. Two and a half weeks later, I got a call. I was there, in that hotel. On a mini "getaway" with the family. The doctor called an
"This is not the end of the road. You don't want to see the end of the road...I have, and it's not pretty"-Dr. Ruldolf's response to me saying, "I just really feel like we are at the end of the road..." We're doing it (by we I mean Case). He's getting the GJ, this Friday. It's not the end of the road but the beginning of one. A new adventure. The GJ will help him grow. The food running straight into his intestines and bypassing his stomache means that it will absorb correctly. And if all goes well, the vomiting will cease, and Case will steadily and painlessly grow. This GJ will be put in at radiology while Case is awake. They will take the Mic-key button he has now out and put a new something (not sure what it is called) in. It will have 3 ports. One that feeds food to the stomache, one that feeds food to the intestines, and one to fill the balloon. If it gets ripped out, we can not put it back in. We will drive to Pittsburgh, and they will
This is great Liz!! SO creative!!
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