Tuesday, January 13, 2009

Some Results, No Answers

We got results from the initial EEG and there is activity. We don't know what the activity is or if it is seizures or what but they felt they needed to look at it further. We were then moved to a different room to be videoed and to do a 24 hour EEG. I saw someone here commented about them (I can't remember who and I don't have time to go back to see, please forgive me). They aren't sure if they will want to do it for 48 hours yet or not. Her MRI has been scheduled for 2PM today so they have to take off the stuff and I am hoping we will be done with the EEG.
We have been treated wonderfully and I can't say enough nice stuff about the staff here. She is still not acting her normal bubbly self but she is not doing the major shaking episodes. Her light shaking episodes were finally seen by one of the nurses last night. It is so faint but there. I was relieved someone else saw.
The SW came to our room and explained the meds they will want to prescribe start at $300 per episode and I guess there are daily meds as well. She is still not covered by Medicaid or our insurance and they won't release her until she is. I am hoping it gets people moving.
I slept on and off in her cage/crib with her. The other kids are freaking out all over poor Rosa and I will have to do something really nice for her when this is over. Without her I am not sure what we would have done.


Gigi said...

It was me that posted. We just got done with a 24 hour video monitoring. We've also done a 5 day eeg and the MRI..My daughter was just a bit older than the poor baby and those MRI's are soo hard. Watching your child be put under is distressing. Afterwards my daughter was not able to walk for the entire day, so be aware that that could happen (no one told me)
I will be thinking of you!

Lyn said...

Our prayers are with you and your LO!

Lorie said...

Oh my goodness. I am so sorry you are having to deal with this with your beautiful baby. I will be praying and thinking of you and your little angel.