back from the doctor... (Neurology Appointment Today)

We just got back from Sophia's neurology appointment. Looks like we will not be weaning off of her medicines. I'm kind of relieved and sort of disappointed. I was hopeful that we could begin weaning and she wouldn't have to take medicines for a while, but I was also nervous that if we did wean her again it would open the doors for seizures to occur. She has been doing fabulous on her current medication so all in all I'm glad we get to stay the course.
I always wonder if the seizures will stop or continue once she is off medicines. I guess that is why they wean them every so often so see how they will respond. We did talk about her "diagnosis" which I was glad he was so willing talk about with me because the other neurologist kinda' beat around the bush and seemed reluctant to categorize Sophia. I just need a reason... give me something to call it so when people ask why she has seizures and why she walks on her tippy toes I don't have to say, "well, they think she has cerebral palsy" it just sounds so ignorant. Either you do or you don't right?
She does have cerebral palsy, which is why she has seizures, they are like secondary to the cerebral palsy. The new doctor seems like a tell it like it is kind of guy. He told us some things to be concerned with for the future and how he was impressed with her abilities given her history. He encouraged me that I was doing a good job, keeping her on a sleep schedule, healthy diet, and keeping her involved in activities like dance, cheerleading, and gymnastics, which all aid in coordination and muscle development. He did NOT refer us to a physical therapist but said to stay the course, keeping her involved in activities and continue to do exercises with her at home.
He said it was not necessary to do EEGs every three months because the results have been the same for the last 3 years and that was silly. No more MRIs every 6-9 months either, he said it was just putting her through added tests when the MRI results were the same since she was 2 1/2. I am relieved that we don't have to do any more unnecessary tests but the hope that they would reveal that everything was normal and everything is fine was kinda taken away.
It's always an awakening experience, every time I take her for these visits. I'm so glad Sophia is thriving, I just always pray for a miracle that we won't have to fight with insurance, worry about pills, seizures, and side-effects, I wish that seizures didn't exist, that cerebral palsy could be cured by magic juice!
I struggle with feeling sad and thankful.. I feel humbled and humiliated... we are so blessed so why do I feel sad? I feel spoiled and embarrassed... I have my daughter, she runs, jumps, talks and plays.. I shouldn't be sad about this- but the fear for what her future hold grips me sometimes. So- I'll be faithful and find strength in God's grace that He is in control and that He will provide for all of our needs.

Be strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you. Dueteronomy 31:6

I'm really not trying to be a downer or ungrateful.. just sharing my real feelings because isn't that why I write this? It's not always about our fun adventures, cute quotes, and adorable faces... this is real life and like our preacher said in a sermon a few weeks ago "Sometimes life stinks, but we can always find joy in knowing we have a faithful God who is always there when we need Him" Preach it Preacher! :)