I spoke with Waverly's ENT this week and we have tentatively scheduled her surgery for the end of March. Wavey's submandibular salivary glands will be removed, via 2 incisions on her neck. After speaking with our specialists and other parents, we think this is the best decision. It is a big surgery, but it should improve her quality of life overall. I am incredibly grateful to our doctors. We have assembled a team around our children who actually want to treat symptoms. Instead of waving everything off to Sanfilippo, the doctors realize that giving Waverly & Oliver the best quality of life for as long as possible must be priority.