We weren't sure if we could go on summer vacation this year because of Waverly being unwell. After much consideration, we decided to just go for it. We didn't want to regret making memories with the kids.
We were very fortunate to get in to see her neurologist a few days before we were scheduled to leave. It was a miracle of timing with someone canceling the moment before I called to try to get in. He listened to my concerns and was willing to try my idea (based on the advice from other parents who have kids with Sanfilippo).
We held off beginning the new medication, hoping we could start it upon our return. Unfortunately about halfway through vacation, her symptoms worsened. She was so upset - crying and banging her head on her wheelchair. We decided to give it a go and give her the new medication. It took about 2 days before we saw an improvement, however she was much happier for the last few days of our trip. I wouldn't say the new medication is a miracle drug yet, but it has potential to keep her comfortable and happy. We even got a few smiles and giggles.
Hoping we have brought her some relief.