Swimming Against The Current

I don't know what is going on with my DBS, my body is twisting in every direction and the pain is unbearable.  I trip several times a day because of the weird position my feet are in and my hips and knees are starting to ache because of the way I'm walking.  I have a twitch in my neck that makes it look like I am nodding my head or dancing to music and going out in public has become embarrassing and terrifying.  I have seen my neurologist several times, who has done adjustments to my DBS and has taken x-rays and CT scans to make sure the leads have not moved.  Tomorrow they will have a meeting with the surgeon to discuss what is happening and what the next steps might be.  I have watched Cody fight through obstacles every day, smile through all the pain he's suffered, and stand strong and brave through so many tests, operations, therapies etc.  I am trying so hard to be like him, to fight through these hard times with a positive attitude and really hope that things will g

I've never met anyone with the kind of bravery and strength that my son has. Cody has gone through more in 4 short years than most people go through in their entire life. On Monday, Cody went into the OR, yet again, to have a pretty complex surgery.  We had to be there at 9:30 and he was not brought back until 2:30.  They made an incision in his neck to carefully move the carotid artery out of the way in order to do the flap.  They were very successful and able to do everything as planned with no complications or injury to the artery.  We didn't get to see Cody in the recovery room until about 6:30 and at that time, he was having a pretty hard time with his breathing.  He required constant monitoring and jaw lifts to open up his airway.  It was horrifying to see as a parent.  After a little while, Cody was moved to the PICU, where he was monitored and sedated over night.  On Tuesday morning, he slowly woke up and was pretty miserable.  His oxygen dipped a few times but he wa

I have never been like everyone else. I am girly, I guess, but I love four wheelers and fast cars.  I enjoying dressing up but I'd rather be in jeans and a tshirt.  I hate high heels.  I love spicy foods.  I don't like to relax, I like to always be on the go.  When it comes to my medical history, nothing has ever been typical or normal.  Everything I have is something no one has seen before.  When I dislocated my shoulders, the ER doctor had to read a book on how to put it back in because it was dislocated in the back not the front.  When I was little I had headaches all the time and no one could figure out why, it felt like there were marbles in my head.  No shoulder surgery was easy, and everything I ever had done, there was a complication.  When I had my tonsils out I got really sick, lost 15 lbs., my throat started bleeding about a week later and I ended up in the ER.  When it comes to my dystonia, once again its not typical or normal... not that dystonia is normal to begi