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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.

Tuesday, October 15, 2013

a little crooked crack update

I know that she will be totally embarrassed that I shared her back end for all to view... But she is a teeny baby... with an incredibly cute and colorful back end.
The incision is completely healed now. It looks a little crazy with the purple polka dots going up it. I assume that they will eventually go away. I also thought in my day dreams of how I thought something like this would look once repaired that her sacral dimple would go away.  It is still there. Her hemangioma is finally at the stage where it doesn't seem to be growing any more. The red raised bumps are new and not going away. They might be related to the the hemangioma still in it's growth cycle. Or not...It's hard to know. That is the beauty of having documented it all with pictures. I can look back and see the progress and changes.

We got stopped at the store today. A very nice gal was curious as to why she needed oxygen and I told her... The long version is so much more impressive and I let it roll of my tongue. She shook her head and said the title was bigger than the baby. The same gal was parked in "preferred parking" (the handicap parking) and I offered to return her cart for her, so she stood by the car with the baby. She noticed that I was driving the van and asked if May was my only... No, she is my youngest of 4.... And not my first to be on oxygen. I told her about Alex and HLHS... Laughing she shook her head and squeezed my arm... Went back to her car and said "I see that you are still smiling"! I said absolutely cause the other way to do things just isn't an option. She completely understood. 






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