Monday, June 30, 2014

New medical news

 Cicily was not a fan of having all the leads pasted onto her head.  Sister Sophie to the rescue!  Sophie and Maya can always make Cicily smile.  The test only lasted 30 minutes and then she was free.
In April Cicily had an EEG to test for seizure activity.  The test results showed: (drum roll please) nothing of course!  Just like every other medical diagnostic test we've done.  This girl is supposedly so perfectly normal!  She had one of her absence seizures just as the lady was putting on her leads, and then didn't have any during the test.

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:

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!