Olivia came home from the hospital Tuesday evening. Wed. and Thurs. she did really well and by Thurs. evening she was very restless and anxious to return to school. We decided to send her to school Friday because she was doing so well and very bored at home. Olivia really loves school. She only made it through half the day because she was just too tired.
We got her home at noon on Friday and she went down for a nap. When she woke up we noticed she was started to have head drop seizures again. She continued to have head drop seizures off and on all day Saturday.
Sunday she woke up and I noticed right away that she was not doing well. She was twitching in her upper shoulder, head & neck and left arm. I got her settled on the living room floor watching cartoons with a snack so she could take her meds. They helped her to have a good morning without twitching but it started again after her nap and very strongly this evening. We spoke with the on call neurologist who basically said if the extra meds don't hold her we will end up back in the hospital with more IV phenobarb.
Please keep Olivia in your prayers still because it will be a while before she is truly stable and we think another hospital stay will be inevitable.