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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, August 2, 2017

June 12th

MayLee had her Nuero appointment on Asher's happy 2nd birthday!!!! 

Her appointment went great. Her doctor is impressed with some of her progress and we will continue to watch that her spine doesn't retether. We had a bit of a worry because she developed a big bump on her tailbone, but the doctor reassured us that it is most likely scar tissue and we will watch it as well. We did find out that she truly does need a sleep study. We need it to help us determine what we will be working with in the future. 

He is never impressed with being confined to the stroller, but there is just no other way to manage his crazy.

We did take him to get a donut after, which he proudly wore, the rest of the day.




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