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.
Case t-shirts are now available!
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Hi guys!
Case is inpatient (again). We are on day 8 of fighting yeast in his central line.
I have some good news though.....We have some awesome t-shirts, etc for sale to help with his on going care!
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...
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...
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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