I have been thinking so much about these two. About how Sanfilippo affects them. I tend to focus on how my life has been impacted, forgetting this is actually happening to them.
Waverly is doing well. Her little joints are continuing to stiffen. Each morning we stretch her arms and legs, careful not to just jostle her out of bed. Patience. Her little feet shuffle and her joints creak. She has trouble maneuvering and just wants to plant her feet firmly on the ground to feel secure. When she walks her knees are beginning to lock - a sign that she is feeling unsteady and doing whatever is in her power to stay upright. I wonder how much pain she is in, knowing her pain tolerance is significantly higher than mine.
Oliver is still moving. His little feet are turning in a bit more and he isn't quite as fast as he used to be. His biggest change is confusion. When he goes out the front door he doesn't walk over to the van anymore. He wanders the front yard, until we call him over. He is forgetting his routine and requires a lot more help to keep him on task.
Typically they parallel play - each in their own world next to one another. I have found them to be closer lately. In a matter of minutes Oliver left his love seat and climbed up (and almost over) Waverly. He loves to put his feet on those he loves, so this was a gesture of adoration for his big sis. Except for the pain of getting kicked and the weight of his legs on her, I know she loves being close with her little brother.