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.

Thursday, September 18, 2014

MayLee's Dr appointment

MayLee has a pulmonolgy appointment today. Usually it is Alex's cardiology day but they peaked at him on Monday after the ribbon cutting and decided we could skip this Thursday. More details on the ribbon cutting later.. 
May is doing beautiful. She is growing, is as smart as they come, and is so verbal. She has been such a good little NEHI patient. Not really much to report because not much has changed. She will continue to fluctuate in liter flow depending on her needs. She will also stay with her asthma action plan because even though this isn't asthma, there is still so little known that this plan is the best for treating it so far. Our amazing pediatrician will try and advocate for the Synigis injection although we don't know if she can get it again based on her age. I have been on high alert because of the new resparitory illness going around and doc U, reassured me that these precautions were actually wise. So that's it!!! I tried so hard to have her wear a mask while we were at the hospital but she wouldn't have it!! 

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