love this very brave girl

Sophia went down to children's today for an EEG.
She has become quite the pro, when it comes to these tests. She was a bit apprehensive this time, but once she remembered the routine she became a bit of a clown. Making silly faces because she realized it would mess up the test. What a stinker!
We did the whole sleep deprivation thing, which is far harder on me than her... thus, I didn't work the beginning of this week. No sugar or caffeine, not that it is a normal part of her diet, sugar yes, but caffeine no. She was thrilled to stay up past her bedtime, not to happy to get up early this morning. I took the kids swimming this morning, we were in the pool before 9am, I was thinking it would get her nice and worn out. Wouldn't you know we got there and she didn't sleep a wink! I was sure she would fall asleep on the way home, nope.
I am currently typing this from her bed, while she still fights falling asleep, I could fall face down on the keyboard but she is still full of piss and vinegar. I think she is so tired she really can't fall asleep. She can't stay awake forever right??
It has become a bit of a tradition for me to play on the computer while she falls asleep. I lay at the foot of her bed with my laptop and she falls alseep listening to the Christian Praise and Worship songs that are on my computer.
She is my little princess Baby! I am so proud of her.
If this EEG comes back with normal results we are one step closer to getting off of a daily medication.
Remember she has too....
be seizure free (grand mal seizures) for 18 months -we are about 13 and 1/2 months in
have a normal 1 hour EEG- we did that today, waiting for results
at her appointment in December if still seizure free we will wean off the medication, then have a 4 day EEG inpatient at the Children's Hospital.
Baby steps- but I am so hopeful that it will be normal results. ;)
I would love to have her off of daily medication! Give her liver a fighting chance. ;) She will need to have another ultrasound for her liver and some bloodwork done in the coming months but nothing urgent, just keeping tabs on it since her liver has been enlarged and high enzymes. Probably from all the medication that her little liver has had to process in the last four years.

Sophia shows us everyday how to walk by faith. My brave one. I love you Sugar Bear!