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Life with the oldest sister who loves theater and fashion, a boy who has Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius, but thinks fishing and electronics rule. The most amazing middle-child-sister-aspiring artist. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum who loves littlest pet shops, American girl dolls, playdates. And one yummy baby brother who has a coarctation and bicuspid valve and thinks super heroes are the best.

Wednesday, July 17, 2013

Waiting, napping, snuggling

We just spoke with Dr. Walker the neurosurgeon. He explained again what he is hoping for. He said her cord is held really far down there and we will just see how it all goes. I am confident in his quiet strength. 
Her incision should run from top to bottom... And he signed her bum:) it made me laugh! We are so lucky to live here in this wonderful valley. We are surrounded by exceptional health care and amazing family and friends. We are also blessed to have so many who love us from afar. Their words of encouragement and constant prayers lift us! 
I would never ever wish this on anyone, but I wish I could have every person I love feel as supported as we do. A fraction of this love would heal the world...   

1 comment:

likeschocolate said...

Praying for miss maylee! Love you guys!