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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.

Friday, January 15, 2016

A serious catch up #2

Things kept going at what seemed like lightening speed. The girls had dance observation and I was able to see them prepare for the winter recital. 

On December 3rd Alex had his annual biopsy. The BIG one ...Da da daaaaaaa... And it turns out we didn't have all super news. His heart function and coronary arteries looked fantastic.. But he had C4 or moderate cellular rejection. This was something we knew might happen. You see.... We changed his rejection medications in order to allow his body to rev up enough to help us fight off the Aspergilliosis.. We knew that doing that his body might recognize his new heart and try to reject. Which is exactly what happened. There is no way to understand how that ugly fungus got in his body in the first place.... And so we had to be aggressive with it and attack it with all our might... After calling on my heart transplant mommy trust for wisdom, I felt better knowing that if we had to experience rejection, Cellular was the best to have. 

I enjoyed trying the RH selfie stick, maybe a little too much.



We took the kids back to visit the Festival of Trees and loved seeing so many awesome trees. This event is such a blessing to not only the kids in the hospital, it also helps us remember our little friends who are no longer on earth. It is a physical way to keep them part of our holiday activity and I love seeing these awesome trees. I also love the trees that are inspired by those who are fighting big battles. 

This is just my snuggle bug..

Dixie from donor services came to talk to Alex's class about organ donation. I hope the kids were inspired and put at ease about what happens. It has been such a blessing to our family.

Early morning blood draw. Everybody masks up so we don't catch the hospital sickies.






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