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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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Half-Brained Thoughts from a Special Needs Momma.

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Top ten thing's I've seriously considered doing when I'm low on sleep and patience. 10. Throwing Case's feeding pump out the window. Really. Some days that thing must beep hundreds of times. He's carrying it around constantly. It beeps when it's empty. It beeps when the tubes twist, kink or clog. It's an annoying, beautiful, life giving machine that I have a love-hate relationship with. 9.  Just driving. And driving. And driving. Alone. With the music blasting. I'd come back eventually but only once I'm well rested with a manicure. 8. Taking the 10+ (front and back) partially filled out papers asking me if my son is "still medically complex and if so to prove it", crumpling them up and leaving them on the doorstep of the office with his bottles of meds, tubes, pump, syringes, all his medical records and maybe some vomit with a note that reads, "Yes, he is still very much the same as he was the last time I did paper work to pr
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I have a confession.

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I have a confession. I'm tired of fighting the food battle. For all of the 17 months Case has been alive, I've been fighting my butt off to get this child to eat right and grow well. The food battle started as soon as Case was born. They whisked him away from me via helicopter (even though we were only minutes away in Magee Women's Hospital) to Pittsburgh Children's Hospital. Once he was gone, the food battle started. I pumped around the clock every three hours to have milk for the time when they allowed me to nourish his tiny body with bottles then with breast. If only it would have been that easy. He was about a week old when they first let him eat, after a day or so they stuck a tube down his nose. Eventually they let me try to nurse. He was too weak. Once he was sent home, they took the tube out of his nose and I was feeding him fortified breast milk every 3 hours (around the clock). I was also pumping. This went on until I could no longer keep my milk (around 3 m
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