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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.

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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