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.

Saturday, February 8, 2014

Day 2

We have made it to day 2 and if you are questioning exactly what that means.. It means something huge!!! Yesterday was the first day of Congenital Heart Defect Awareness week.. It was also the first day Alex was listed for a new heart! It is such a blessing to live in a time when we have medicine to help us have more time with him. He is such a fun and sweet boy! Alex is listed 1B status and has 86% avoids.. In heart world talk, the odds are stacked against us. But, we have so many incredible blessings that we are so thankful for. We have each other at home. Being listed at 1B means he gets to live as normal as possible. It also means that I can take care of my sweet girlies who need me. All of the kids are so young. The baby has medical needs and doctor appointments that need to be taken care of as well. We are able to manage all of her needs with this status.
I thought I would take pictures of a few things that are normal to us but different to others... Add them here... Just for you!! 


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