I'm thankful for...

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All of my children. Today we celebrated our second oldest child Samantha's 7th birthday at the zoo!

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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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It's my story and I'm stickin' to it!

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This life that I'm living is my story. It was written before I was born. A beautiful story full of tears and smiles, exhaustion and energy. I'm not in control of most of my story, just how I choose to "be." I want to be a character full of grace. I want people to think of my story and smile, but mostly I want to make my maker proud. Some days feel like they'll never end.  I feel like I'm in over my head with paper work, phone calls, and children, but when I close my eyes at night, I'm certain this is the perfect story for me. This past Tuesday I was having a "blah" day. I was discouraged in the fact that it seems like lately when we get one of Case's problems under control 2 more rise up. It's like taking one step forward and two steps back. When I got the mail that day there was a small box with a simple bracelet from a dear friend. You see, my birthday is tomorrow and she got me a gift but what she didn't know is that it would co...
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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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