I don't get it!

So we still don't have a lot of new information. All we know is that while the medication has slowed down the seizures, they haven't stopped. Yesterday I was told to increase her dose up 5 mls. I already feel like she is taking so much and her personality has changed I was hoping we wouldn't have to. Tomorrow she goes in for another eeg. My poor kid is already sleep deprived, but I will have to wake her up at 4:30. Long day ahead! Zoey is still doing well though. She doesn't sleep well at night and hardley sleep during the day because of the medicine, yet she is still smiling. She loves to be cuddled and if she had it her way, would stay in my arms all day and night. Unfourtunatley for her, she has a brother that doesn't understand what she is going through yet and wants play time and mommy time. Very difficult to balance time when naps fos Zoey are so rare! I hope tomorrow we can maybe get some idea of what to expect if this medicine doesn't work.

I have learned some new worrying things. I guess there have been multiple families that have been diagnosed with this, that have the MRI done and were told it was fine, only to go and get a second opinion and find out there were abnormalities. I put so much faith into the dr.'s that this has totally freaked me out. We plan on asking to get an additional MRI to double check. My last complaint for today is how ridiculous pediatrician offices have been. Pediatrics is the care of children right? Babies to 18 year olds. So why when I go in to an office to get a blood pressure check do they not have the right size? No baby size at all! I can understand a family practice, but pediatric? Don't get it. I went to 2 different  pediatric offices and also the hospital and none have them. How do hospitals take newborn BP? Then when Zoey has an abnormal blood pressure that is extremly high, they didn't even re check it. High blood pressure for my baby is anything over 100/50. So when 142/78 shows up shouldn't that make you worry? Instead they sent us on our way. Glad my mom has patience because she had to drive around trying to find someone that could do her BP correctly. Sad thing is that that dr. Was in draper not tooele!

Now that I have that venting session out of the way.... things are ok. Zoey still laughs and smiles. joseph gets his fill of mickey mouse. James and I are somewhat like zombies, but we are enjoying these kids. Once you get the routine down it's not so bad! Hopefully tomorrow we will have some information on what to expect!