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.

Monday, January 6, 2014

May's birthday

What an incredible first year... She has had RSV, Brinchiolitis, surgery to detether her Tethered Spinal cord.. Visited with specialists to better understand her asymmetrical duplicated gluteal cleft, lumbar hemangioma, and then a CT and swallow study to help us figure out her NeuroEndocrine Cell Hypoplasia of Infancy. Despite all that she is happy and sweet as can be. She has learned to walk and can say a few words and signs her first word... More... She eats like a champ and is so loved by her sibs... She is momma's buddy but Auntie Ave can take her with very little persuasion. She is learning to sleep through the night. 

Oh my gooshie!!! My mom made this baby maxi.. Too cute!!!

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