Rain & Chewing

Yesterday was our 11th wedding anniversary. Matt had to work, so we put off a celebration until today. It was beautiful, so we went down to walk the National Mall and visit the Museum of Natural History and the National Gallery of Art. Oliver loves the mammals room and Matt & I enjoy the modern art collection. Waverly simply enjoys being around all of the people and riding in her stroller.

While we were walking to lunch at one of our favorite DC food courts, Waverly started jabbering. And then all of a sudden she said "rain, rain, down". Wow!! She was singing "Rain, Rain, Rain Came Down, Down, Down" from "Winnie the Pooh". I always sing a Pooh medley of songs to her and she used to sing along with me or at least finish the lines. She hasn't said a word for weeks, so it was incredible to hear her say 2 words in song form. Music to my ears.

Sweet little Oliver has also being doing something new this week...putting things in his mouth and chewing on toys. Waverly started doing the same thing around age 3. It is typical for kids with Sanfilippo to have an incredibly strong desire to chew. But seeing it manifest in Oliver feels a bit like the beginning of the end. This is a blatant reminder that he has MPS. Matt and I hate seeing this new behavior. The impulse to chew and mouth items is so strong that it takes over the child's ability to appropriately play or participate in an activity. I don't want to see Sanfilippo impact Oliver's day like that. I hate knowing what has happened to Wavey is beginning to happen to him.