New Dr. And hope!

We have had a little bit of drama the last week or so. We have been in contact with another family here in tooele, going through the same thing we are, at the same time too! We have also been using the same Dr. Which is good until both patients have issues with that Dr. So both kids are taking vigabitrin. Their poor little baby was given the wrong dosage. Not off by a little either. While zoey was given a dose that was normal, they increased it too quickly. That led to a bit of panic for us because when you lose trust in your Dr. It's very hard to get it back. This is my child's future. This will determine what her quality of life will be. What was frustrating is that this Dr. Wasn't really my Dr. The Dr. We started out with left for a month and didn't bother to tell us, or let us know who we could go to instead. After a few phone calls we finally had another meeting set up with a highly.recommended Dr. At primary's.
Zoey's seizures have not stopped. She has been on vigabitrin for a week now and I really haven't noticed a huge difference. She hasn't had any painful ones, and her head dropping ones aren't as frequent. Other than that... She is still having 30 or so a day. Not very reassuring and since the med is so hard on her its frustrating to not see results. Yesterday we had a fun filled day at the hospital. Zoey magically stayed asleep even after I got her out of the car(that never happens)! We had to run some more eye trests, to measure her retina and also one to check how her eyes were connecting with her nerves and brain. The first test again my baby stayed asleep! The second test... Not so lucky. They have to numb up her eye with some drops, no idea how she slept through that. Then they have to put this contact lens in her eye. It is not a small contact and looks freaky! That was when she had a good old fight with me. I won and we finished the test quickly and I'm glad that one is done!
When we finally got to meet the new Dr.  It was the most optimistic I have felt in a long time. Zoey is doing everything she should be. Very social, reflexes are doing what they should. Her little arm that has been tucked up by her side is now moving much better and she is wanting to move it. She is not rolling over because bless her the Dr said she has too much weight! She doesnt know how to account for the extra chub she has going on. Love those steroids!  The only thing the Dr is worried about is that she needs to use her mouth to try and chat more. She chats alot, but only in squeals and grunts. The Dr. Wants her to babble a little more. The. Other thing that we aren't sure about is startle seizures. They aren't sure if it is part of the infantile spasms or the start of her other epilepsy. I really hope its not startle seizures... They don't sound very promising from what I have researched.
All in all she is learning and is happy. They said it was a good thing that she is able to learn things while still having seizures. This med can take the full 2 weeks before it works. She may have 30 seizures one day and none the next so it will be a wait and see. The plan is to wait until our Aug. 12 appointment and EEG. And figure out the next move, if med isn't working. She also start physical therapy on the 6! Now all I need is for Zoey to sleep at night and things will be so much better! She stops the steroid on Sunday and I hope that fixes the problem!