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Information overload.

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Case had his appointments Thursday. First was Dr. Schneck, the senior surgeon with urology at Children's. He's the surgeon who did his surgery on March 2nd and will do the next 3 surgeries on his boy parts. He said everything looks good and is lowering his "family jewels" ;) on July 9th. We were told to pack a bag and leave it in the car. So, it may or may not be out patient. Next was Dr. Ruldolph with GI. I love him and he loves Case. He asked how things in the feeding area are going, not great was my answer. Case has been vomiting and retching up to 12 times a day and sometimes through the night. He seems uncomfortable after most feeds.  He's showing a little interest in taking things by mouth but has a very hard time swallowing. He lost weight. Not a huge concern but still not ideal. Dr. Ruldolph is checking him for soy and lactose allergies. He also ordered an upper GI for April 30th, a swallow study for June 21st and switched him from Pediasure 1.5 to Pediasu...
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About Case.

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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...
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In the middle of my little mess..

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One of my favorite "Case songs" is  This Is The Stuff by,  Francesca Battistelli . The first time I heard it was at CHP during his 38 day NICU stay. My favorite line is: "In the middle of my little mess I forget how big I'm blessed" and "So break me of impatience Conquer my frustrations I've got a new appreciation It's not the end of the world". Granted, I have more "little messes" than parents of all "typical" children. And maybe some of my "messes" are a little bigger than little BUT they aren't burying my son (something I was told to prepare to do) and they aren't going to kill me (well, at least I hope not! Lol). Being a special mom is hard. It's exhausting. You feel constantly on guard for the next "mess". You're frequently fighting with insurance companies, pharmacies and billing offices. You clean up puke more times than you tie your shoe and JUST as you're about to walk...
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