Hi there- I'm also in Las Vegas. While my son doesn't have an LM (he has a hemangioma), we are in almost the same boat. After 20 months of treatments that didn't work, we are also going to Dr. Levitin for removal. I also have HPN, but the POS and Dr. Levitin also assured me that he is capable of getting exceptions for the surgery.
Please let me know if you need anything, locally. We travelled back and forth to a ped. derm. in san diego for a year, so I know what you are going through. You can always contact me directly- firstname.lastname@example.org
I'm in the Mountains Edge area and am thinking about putting together a local awareness group and raising money for the VBF.
I hope Miley is doing well!