In May Cicily and I went to talk to a group of doctors (2 neurologists, 1 neurosurgeon) and physical therapists to discuss if a procedure called Deep Brain Stimulation (DBS) would be appropriate and potentially helpful for Cicily's dystonic movements. We met for 4 hours and we even got to meet a girl who had the procedure and her family. After the appointment the doctors and therapists met and discussed if this could help Cicily. A week later we got a call saying they would like to do the procedure on Cicily. Now it's up to Me, Chris and Cicily to decide if it's worth the potential gain.
For a DBS procedure the neurosurgeon places electrodes in the brain and then connects them to a transmitter placed in the abdomen. Then 2 weeks later the neurologist turns on the electrodes and fine tunes them with the transmitter (all remotely). It's supposed to help the brain send signals better and helps people control their movements better. There is a 20-30% risk of infection with the surgery. Knowing Cicily and infections, if there's that good a chance, then it's likely she'd get it! Decisions, decisions
Here's more info on DBS if you're interested: http://www.mayoclinic.org/tests-procedures/deep-brain-stimulation/basics/definition/prc-20019122
Last week Cicily went to the geneticist. She thought it would be a good idea to do another chromosome micro array because the technology has improved since Cicily had the test 5 years ago that showed normal chromosomes. The great part for Cicily was they could now swab her cheeks instead of drawing blood. Cicily was quite happy about her cheek swab and kept signing to tell Dad and Grandma about it. Results for the CMA come back in 2-3 weeks. Probably will be normal, but if it's not you'll find out here first!