A Very Special Case.

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...

"When he gets that tube replaced, he'll feel like a new man!" -D irect quite from his older sister, Meredith who is 8.:) Mr. Tough-as-Nails is having another procedure today. His GJ has worked its way out of his intestines and into his stomach. No one knows when this happened but we found out via x-ray on Friday. Since Friday he has gotten progressively worse. He is retching and vomiting a little more each day and is experiencing pain. Yesterday morning and afternoon he was pretty uncomfortable. He pointed at his tube and said "ow" a few times. It is important that we get this tube into the right organ for obvious reasons. So, today at three he will head to the IR at Pittsburgh Children's Hospital and will come out a "new man" . Little man has been through a lot in the last 19 months and it seems things aren't slowing down. The pediatrician is adding another specialist for his feet and it seems little man takes one step froward and two steps ...