A week ago I asked prayer for 4 things. The first two have been answered above and beyond! Thank you, Lord. Corban is up to full feeds on the fatty milk, AND he's still doing well off the ventilator. He was doing so well, in fact, that they took the nasal cannula away completely. I got a snapshot of Corban tonight, with NOTHING on his face!
My name is Corban Levi and I was born with a rare genetic condition called Sheldon-Hall syndrome. Along with it, I have something called arthrogryposis multiplex congenita, which means that my joints are contracted and my muscles are very weak. I have also been diagnosed with something called bicoronal synostosis, which makes me a "cranio-kid," as they call it.
Because I didn't move much in my mommy's belly, my bones were weak and 4 of them broke at birth. My hips were dislocated too, but after a long 9 hour surgery, they're in place.
I had tons of fluid on my lungs after I was born, and had to have multiple sets of chest tubes for over 8 weeks because of it. I had trouble learning how to eat and and how to breathe on my own (still working on the eating part).
Because of all these things, I spent the first 5 months of my life in the NICU. It was a roller coaster ride, and there were days when no one knew if I would make it out alive. But just 5 days before Christmas, I finally got to go home!
I just celebrated my 4th birthday, and am so glad to be living life with my mommy, daddy, brother and sister who love me very, very much. They say I am their extra special gift from God, dedicated back to him. And I say, that's PERFECT!
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