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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, December 12, 2018

Now for MayLee

MayLee is so inquisitive and happy. She loves to play toys and with friends.... She is such a great friend too, but man does she have a feisty streak with her siblings. She always keeps us laughing with her little tricks and sense of humor.  Like with Spider man... "He totally fluffed mom" so funny....
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Even from here you can see by her body posturing that this is something she is pretty nervous about. She wants to ask the child already at the slide a million questions about safety and speed. The kid is like leave me alone and just do it. As you can she she liked it....




A skeleton queen for Halloween. She has a crown that was not conducive to trick or treating.






MayLee also loved our Cruise. She is such an adventurer and loves to get right in there and find sea glass and shells.






Towel buddies with May's teddy


















































She doesn't smile but she loves rides sooooooo much. Disney is her kind of place.

May also visited with Urology and she is doing great. On her meds she has been a rock star. I am so impressed with her! YAY!!!







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