Day 64

No diagnosis as of yet. They have many tests out but take a while to come back. She is on a really high dose of Phenobarbital. The normal level is 20-40, hers is at 100. As a result they had to put her on a respirator & they are hoping to get her off of it tomorrow. The first time they tried to take her off, she didn't handle it very well, so hopefully this time it will be better. They are going to do a skin & muscle biopsy to determine a specific metabolic disease. They are also looking into doing another spinal tap for another type of disease. This will probably not take place until sometime next week.

Her seizures are currently under control & the neurologists are very pleased about that. The first few days she was pretty doped up, but the last couple of days she has had some alert times & the nursing staff seems to be very impressed with her interaction.

The goal is to keep her seizures under control by finding her maintenance level. Once they feel they have enough tests in process & she is stable, she should be able to come home. Some of the tests that they want to run take 8-12 weeks to come back, so it will not keep her here.

I will say however, that we definitely made the right move coming here. They are much more proactive instead of reactive. Even though we don't have any answers (and we may never), at least they are testing for more rare diseases & not just settling. This is the first time her seizures have been completely under control, that alone is an accomplishment.

Kevin is planning to fly back Wednesday afternoon. I am staying here with Brianna for a while to hopefully give them more time to get some answers.