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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.

Sunday, January 13, 2008

Sunday

Yesterday was kind of a harder day for Alex..He was placed on a high flow cannula and was really cranky and over stimulated...We seem to be having a better day today. I think part of it is his new location closer to the door. There is so much going on that he wants to watch it all. So today they will continue to ween off his drips and try and ween down his O2's and we will just be resting...

3 comments:

Anonymous said...

I hope things continue to get better and better. I am amazed at what these little heart babies go through....we're thinking of you guys.

Anonymous said...

I think I would want to watch everything to. Hope he gets the rest he needs today. Thanks for the really fun visit, it was so nice seeing you, Jeff and Alex. Please remember we are here if you guys need anything! LYL

Anonymous said...

We missed you at dance today! Hope Alex is doing well.