Guess I need to update this thing huh?
When we left Cleveland Emily's seizure were doing so much better, anywhere from 0-8 is what we saw. I say saw because she has many more that we don't see. Still that is amazing, much better than 40-70/day.
We did not know if it was the new med, increase in another or the steroids. Emily always does really well for a few days after a dose of steroids and yesterday we found out that it was the steroids because yesterday she had 41 seizures and she has already started this morning.
Every night before we go to bed we pray with Emily and we pray that the monster (seizures) will leave her alone, I pray one day I will see her last seizure.
So now that I got the bad stuff out of the way.....
We got our new full time nurse , well she is 4 days/week, and I really like her. I think she will work out great for us. I am so thankful too because we have had a few that I just did not feel comfortable with and now that she is here 4 days and then we have another nurse for Fridays that I really like too I feel like soon I will be able to sleep a little more :) yay!!
I had to get Emily a new bathtub because the one she was using was getting too small for her, it just was not made to hold a baby her size. I am on a few online support groups and they have been so incredibly helpful and I asked them what they did for a tub when their kids outgrew the baby bath but could not set up to use the big tub. Some one suggested a pillow like "bathtub" called safer bather. So we got it and it's amazing! I wish that I would have known about this before I had her. It is great for newborns and it is perfect for Emily. She really likes it too because she can stretch out. It holds her perfectly and it tapers slightly so that when she gets bigger it can just go under her back to support her head.