I got to hold Corban for 2 hours today! It was hard to believe when I looked at the clock. It seemed like only 10 minutes! But it was wonderful. Completely wonderful. So I have determined to try to hold him every day (if at all possible) 'cause he really seems to like it! And of course, I love it.
Also, the doctor today mentioned getting a meeting set up with us + all of Corban's doctors, nurses, the surgeon and the geneticist, so we can all get on the same page regarding his care. THAT would be simply amazing.
CORBAN LEVI
a gift, dedicated to God
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 arthrogrypo
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!
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!
Corban's Story
Blog Archive
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2011
(96)
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October
(20)
- 2 Tsp. of Milk and Doing Well
- Holding Corban Upright
- Corban and Mommy Kangaroo Care
- First Time On His Belly
- The "Family Meeting"
- That Pesky Edema
- Mom's Know Stuff Too!
- Limp, in My Arms
- Daddy Loves Me Too
- Determined to Hold Him
- Clamping Down
- A Day in the NICU Life
- God's Grace is Greater
- He's NOT Doing Well
- Pneumonia?
- No Chest Tubes
- Corban, a Gift Devoted to God
- Head is Swollen
- Broviac Bad News
- Very Special Hands and Feet
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October
(20)
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