Well, Friday started out as any old day and then dinner came along. We all sat down for a relaxing meal and noticed Josephine started moving her head left to right in a repetitive motion. My mom noticed Josephine had been looking at the dining room light just before the movements. We waited and observed for about 15 minutes and saw the same thing occur again. And again. After brief discussion, we decided to call the neurologist, Dr. Bojko, to alert her of the situation.
The on-call doc told us to take Josephine to the ER, which we did without too much panic. We didn’t want Little Sheldon to worry.
The ER staff was amazing! They whisked us in quickly and we were seen by the attending pediatrician within 20 minutes. After consultation with Dr. Bojko, Josephine was admitted for another EEG test. The difference is this time the doctors will monitor her with a video camera so the movements can be captured on camera as well on electronically on the EEG machine. Updates to follow…
On the medical side of Tetrasomy 8p (Genetic Disorder)
Josephine took a trip to the neurologist on July 26. The neurologist wanted to monitor her brain activity for a 48 hour period. The process of attaching the 26 electrodes was less than wonderful, both for Josephine and Mom and Dad.
But after the procedure, Josephine became our little cosmonaut (see pictures above)!
No results yet from that test. Next up is the brain MRI, which is scheduled for August 6. This is another big test to give us some big answers – does Josephine have a corpus callosum (arched bridge of nervous tissue that connects the two cerebral hemispheres, allowing communication between the right and left sides of the brain) and does she have hydrocephalus (water on the brain)?
Josephine has been experiencing, what I think to be petit mal seizures – vacant stares for a few seconds and head twitching in repetition of 2-4 movements.
This MRI will give us a better idea of her prognosis. Every test leads to a new piece of the puzzle. We may not always get the answers we want to hear, but it’s better to deal with what’s coming head on. Denial is not our friend at this point.