Where to Begin...

This is Lily. She will be 7 months old this Monday. She and her older sister Elise are the lights of our lives. This Wednesday, Lily was diagnosed with microcephaly.

Back in December of last year, the family doctor we were seeing noticed that Lily's head size was falling down the charts. She was born at the 25th percentile in July and by December was down to the 3rd percentile. He also noticed that her soft spot was very small. He suggested that it might be a condition called craniosynostosis and referred us to a team of specialists at Lucile Packard Children's Hospital.

After a CT scan and seeing a craniofacial surgeon and neurosurgeon, we were told that the suture running from Lily's soft spot to the bridge of her nose was prematurely fused. But it was mild enough that she was not in need of surgery at that time. Yay! We thought we'd dodged a bullet and went home happy.

Two weeks ago we went in for Lily's six month check up and her head was exactly the same size as it had been in December. It now is no longer on any growth charts but is two standard deviations below the chart (i.e. her head is two centimeters smaller than the lowest percentile on the growth chart). The pediatrician was concerned and ordered numerous tests. All the bloodwork came back clear: no food allergies, no viruses, no blood disorders. Her physical exam showed that she was behind on her motor skills (no rolling over, grasping objects, or sitting up) and that her arms were a bit weak and her legs overly rigid. We were referred to a neurologist and an orthopedic surgeon to check out an abnormality in her left hip which was noticed in an xray.

This Wednesday we were able to get in to see the neurologist (thanks, apparently, to the pediatrician calling him personally and begging to get us in ASAP). He immediately diagnosed her with microcephaly. After a thorough exam and taking a medical history, he felt that it is not degenerative. Lily is scheduled to have a full body MRI on March 1st, which will, hopefully, confirm his gut reaction. She will have to be fully sedated for 4-5 hours for this procedure.

We are trying to stay hopeful. She is a beautiful, loving little girl. She knows who her family members are and squeals when we play with her. She's doing her best to roll over. She loves music, being sung to, and dancing around. Right now we are just hoping that this diagnosis will not be that this is fatal.

Mostly I started this blog to keep friends and family informed. I don't feel that I can explain all of this repeatedly because it is just too scary and emotionally taxing right now. I will try to update this space as soon as we have new information. We appreciate all the love and thoughts and phone calls, emails, etc. Thank you.