Wednesdays post is supposed to be about leading week 3 of Pulling The Thread but my mind just can’t go there tonight as I write this post. In reality my mind is stuck on what is going to happen on Wednesday.
Lilly and I are going to set foot onto Floor 4 of our children’s hospital.
In the last few years I have adjusted to the many doctors appointments and I no longer get freaked out by them. I believe it’s because God has healed my mind and I now have a calmness in my mind that I did not have back then.
Tomorrow we go back in time to the first where our journey began with Lilly. This is where we had our first diagnosis.
We are going to see Lilly’s Neurologist.
Her neurologist was the person to explain how sever her brain injury to us. He was also the one who first uttered the words Cerebral Palsy to us when she was 4 months old. This doctor also gave me the best advice to this day as a person.
“You are her biggest tool. You know what is going on with her the best. You are her best medical person advocate and use it.”
I use the words seizure disorder because I know the reason why my child has seizures, a brain injury that happened 0-72 hours before birth. In Lilly’s case she went into uncontrollable seizure state shortly after birth.
Lilly had not a small seizure but a massive one that took some big drugs to stop. I remember sitting in that hospital POD praying that she would come off life support. It also was that same room we got the first diagnosis off the first MRI and EEG.
It has been 6 years and 2 months since our last hospital stay.
It has been 6 years and 2 months since our last official seizure.
It has been 6 years and 2 months since we really understood how sever Lilly’s brain injury was.
It has been 6 years and 6 months since Lilly came off respirator tubes.
It has been 6 years and 6 months since a Brain Injury changed our life.
On Wednesday Lilly will get her first EEG in two years. (A milestone for us considering at one point it was ever 3-6 months) For Lilly’s Neurologist team it’s a happy appointment because they get to hear how great she is doing.
That her ability has continued to suppress her MRI diagnose of vegetable state and she has maintained no surface seizures.
In the past 6 years and 6 months things haven’t gotten easier but what has is how I handle it. The symptoms constantly change in Lilly’s’ day to day rehab; one point it was seizures, another time feeding and swallowing, and now it is major surgery on her legs.
For us living with a brain injury survivor is just a way of life.
But for me Neurology will always be my ground zero. It’s where my mind goes back to where it first started and that is why I am freaked out about going back.