Zzz....

Sanfilippo has a way of constantly changing things up, just when you think you have settled into a routine.  We never know what is coming around the next bend in the road.   

Waverly has been great the past few days.  Yesterday she was singing songs that we haven't heard for months - the Winnie the Pooh theme song and "Happy Birthday".  She has also been incredibly interested in her books.  Her school is having a Read-a-Thon, so we have been pulling out all of the old classics.  She will sit through multiple books, giggling at the parts that used to make her laugh.  

Of course, she has also decided that sleep isn't necessary.  We haven't had the severe sleep issues that many families who have children with Sanfilippo have faced.  Wavey went through some phases, but the past 2 years she has consistently woken up once in the middle of the night and then will go back to sleep.  Falling asleep was always difficult for her, but once we introduced Melatonin into our nighttime routine, she has been asleep within 20 minutes on average.  That is, of course, until the past few days.  It took us over 90 minutes to get her to fall asleep last night and the past 2 days she woke up at 4:45 am, eager to start her day.  I am not sure if this is a bump in the road or a whole new phase in this disease.