I'm new on here, and this is my first post. I'm very sorry, I do know how you feel and its not a good feeling...my daughter Emma has CMTC, she was born June 3rd 2011. Your not alone ! My daughter has it on both arms her stomach and back and her left leg, which is smaller than the other.
Does your daughter have the purple on her hand ?
If it is CMTC , her blood vessels are dilated and they restrict the growth of the tissues and fat underneath. Maybe that is why her hand appears bigger ? Maybe it would be helpful to post some pictures.
Where are you from ? I know in your post you said OU, I'm guessing Ohio but not sure.
Hope you and your daughter are doing ok.