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Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Sunday, November 24, 2013

Heart-skin-spine-lung mom

There are so many differences between all these things. No wonder they have specialist. It is amazing to me that we have learned so many things about our bodies. While I have had a crash course and can remember dumb details like, one of Alex's infections (bacillusserious) is recreated by reheating ham fried rice. Or that MayLee's Hemangioma is flat so we don't have to worry about it. I can also tell you that I have tried every trick in the book to rid Eden of her chicken skin, it flares in the fall. Really only in the fall. I plan on tryng diet next. There is still so much to learn and so many questions to ask. Like what is growing on Gators leg??? I am glad to report it is not Mersa. And it looks way better now that we have been doing the cream for a week. Better take Gator to see a dermatologist for his Moluscum, and eczema. I am so amazed that we have made so many wonderful advancements. 

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