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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, February 14, 2018

January 23 Happy Heartiversary

We have had such great news about Alex's heart health so far this year. While his body still needs tweaking here and there, we are happy that it usually isn't something major. And we are extremely grateful to our amazing donor family and their sweet little Julie. Having been born with a congenital heart defect, we knew that Alex's heart would some day wear itself out. We never could have imagined that it would be when he was only six years old. Then to be 7 when he got his new heart means an exchange of thinking. He needs to be on medication his whole life so that his body doesn't see his new heart as foreign and try to reject. There have been little complications for those medications. But his life has changed for the better. His energy and ability to do the same thing as his siblings and peers is amazing.

My sweet friend Michelle and her cute daughter Katie remembered our heart day and brought us these balloons and treats (1095 huge M&M's for each new heart day) 
We took treats to his class, and had a special dinner out. He chose Costa Vida.. Yummy!!! It was a great day to remember, to be grateful for and to enjoy each other!!!






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