Monday, October 13, 2008
Back in Detroit...
We are back in Detroit for the MRI and AMT PET scan. We had about an hour delay at the airport and checked in to the Ronald McDonald House last night at around 7pm. Sophie was her usual self on the plane. Loud and obnoxious (continually kicking and pushing on the seat in front of her). She is strong. She locks those knees and it is hard to hold her legs down. But about fifteen minutes after takeoff, she was fast asleep. Then thirty minutes prior to landing, the pilot comes on over the loudspeaker and wakes her up. Same scenario every time.
The room we are staying in is rather nice. Newly remodeled with a sleep number bed. Though, we haven't quite figured out how to use it yet. Sophie had an absolutely horrible night. She woke up numerous times. At one point, her seizures were so bad that after each seizure she would scream out at the top of her lungs...like she was in horrible pain. Tears were streaming down her face. Her body kept jerking. It was heartbreaking. Surgery could stop this. I want this so bad like nothing else I have ever wanted before. I pray to God that seizure freedom is in the path that lays before Sophie. That surgery will take us down that path.
"But in the end who truly knows the path these children will forge. No one. Well, maybe One person. But us, their parents, all we know is that we love our children. Regardless. We face what ever comes our way, their way and we hit it head on. We pledge to them unconditional love and the promise to not abandon them. To encourage them to be the best they can be. To let them know the world is theirs for the taking as long as they go after it with patience, kindness, gratitude and love for their fellow man and God." ...by Heather Needham.
So now I am sitting in our room. Sophie is sleeping peacefully next to me. The MRI was this morning and everything went well. They left the IV in her hand so that she wouldn't have to get repoked tomorrow. Well, actually, she will still get poked tomorrow. She has to have 2 IVs for the PET scan. One IV to inject the radioactive tracer AMT and sedation. And one IV to draw blood at periodic intervals to check how her body is metabolizing the tracer.
So, hopefully, Sophie will sleep soundly for the next few hours and wake up happy. She definitely needs the rest.