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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, February 14, 2018

January 12, annual biopsy

He needed a haircut ssssoooooo bad...Besides that, Alex's Cath showed wonderful pressures, 7 gradient through the aorta due to where his new heart is grafted onto his original anatomy. Scar tissue is causing a band to form. But our docs won't even change anything until the pressure is above 10. Which completely depends on Alex's overall growth. Wonderful news! Then his biopsy came back squeaky clean. 

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