This was posted by her family:

I haven’t done an update in a while so here it goes. Lydia has not been doing well since January. She has been crying and has been inconsolable with severe pain and having intermittent vomiting since then. We have taken her to the hospital several times, and our hospital at home in Virginia has not been able to do anything for her. They started her on some pretty significant pain meds and they have not really been helping that much. She was in the hospital in Virginia for 2 weeks in June and they could not figure out the source of her pain and vomiting. So we got her discharged from there and brought her to Cincinnati Children’s. She has been inpatient here in Cincinnati for awhile now and they have done all kinds of tests trying to find out what is causing these symptoms. They ultimately found a soft tissue mass on her skull. It has been growing pretty rapidly and it is surrounding her shunt in her brain. So she will be having surgery to remove and biopsy that mass tomorrow. They will also have to revise her shunt somehow. It may have to be done in 2 separate surgeries. The neurosurgeon said he may have to leave her shunt external for now. We won’t really know until he gets in there and see how it goes. Please pray for her and us and her team of doctors. We are blessed to be able to stay at Ronald Mcdonald House right next to the hospital.