Powered by Kai to Advocate for Families Now: My testimony in support of S1138 On June 10, I joined a small group of pediatric palliative care professionals and advocates to testify before the State on behalf of providing comprehensive palliative care to ALL qualifying families in Massachusetts. I really had no idea what I was really agreeing too… Continue reading E pluribus unum, one out of many – advocating for all.
This morning we had about 5 minutes of open eyes. His hands were cold and his fingers were blue yet his breaths and heart were steady. By midmorning his head was feeling warm to me and I noticed the color came back into his hands and feet. We decided to do some suctioning to try… Continue reading Saturday -fever
The past few days have been tough on me. Kai is feeling better since we are treating his ear infection, but not as good as I had hoped. I’v been spending my days researching these stupid tumors again. Looking for treatments. Hoping that I can find something that I can convince myself might help him.… Continue reading Getting hard to do nothing