Hello everyone,
Thanks for the replies... I am just updating you all on her visit today.. She was excellent.. Brooke was hurting so bad that she was having alot of dystonic movements and the Dr. automatically put her into a room, changed the temperature to her desires, put her onto a heated water type bed and had soothing music , images on the wall to relax her with a nurse to sit while we talked over her last few years.. Then they did the thermagram.. A reply to Frogga's question is that she does her thermagram to have pictures throughout her treatment and care , and saves them, while doing the photon therapy ,which she did today minimal treatment to see if she responds, she watches the thermagram to see if the temperature is changing.. It did do some changing in her hands and feet today.. But we have to go mon, tues, thur,fri,next week.. She compares the images and will be able to see how her body is going to respond to the therapy.. Brooke did well throughout it all for as much pain she was and is in.. The DR was wonderful as to making sure Brooke was comfortable etc.. Brooke was unable to open her hand bilaterally today and she was like thats fine, your doin great we will take what you can give us.. I sure hope and pray this may help.. I am not getting my hopes up though.. The doctor also works with a cardiologist, endocrinologist, and other medical on her team/group with getting firm diagnosis...
Betsy