Life with the oldest sister who loves theater and fashion, a boy who has Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius, but thinks fishing and electronics rule. The most amazing middle-child-sister-aspiring artist. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum who loves littlest pet shops, American girl dolls, playdates. And one yummy baby brother who has a coarctation and bicuspid valve and thinks super heroes are the best.

Tuesday, April 1, 2014


We have most of the results from Sunday night to Monday morning.. 
He killed me in Cars memory.. My memory just isn't as sharp anymore *wink*... 
Since he does pills so well now, anytime liquid meds are the only option he gags them down.. I let him have some cafeen free diet coca low low. A huge treat for me because I have been sober for almost  four months. It really hasn't been too bad. 

So the results are...
Echo (pictured above) looks unchanged from the last one. This means he isn't getting worse! 
Labs/CBC/CRP- normal and no major infections.
No changes on medications or activity. 
He is doing pretty great. 
We haven't gotten the results from his PRA panel. I am hoping his antibodies have gone down and he is responding to treatment. 
We scheduled the next IVIG treatment and will wait to hear what his titers say to confirm. 

May had her synigis injections. Those are mean shots but have clearly done their jobs thus far. I am so grateful for medicine, vaccinations, and immunizations that make it possible for my kids to live today. 

1 comment:

likeschocolate said...

That straw is hilarious!