Bags and Baskets
March 25, 2008 5:00 PM

Juliana had her 5th birthday this month. She had a "birthday party" with family and a few friends. She put her presents into one of those large pretty bags which are used for gifts and carried the bag around for days. She loves bags. When I get there in the evening she gathers up some toys and books, puts them into a bag, and brings it upstairs to her room. She wants the bag full of toys in the bed with her. Once she gets in the bed she wants to "multitask." She wants the DVD to be playing, and while she's watching it she also wants to be coloring or reading a book. She'd want me to get into the bed with her but I don't really fit! I kind of lean on the edge of her bed and she lays against me with a hug. She likes to "read" storybooks to me, holding the book and turning the pages for me to see the pictures. After a while she'll settle back against the pillow and soon be asleep.

She enjoyed Easter too. She has an Easter basket which she carries around everywhere. She doesn't eat (she gets her nutrition through her feeding tube), but she likes to taste things. She doesn't really swallow any, but she gets it smeared around her mouth. She tasted an egg and some chocolate. Once she tasted some chocolate cake and signed that she liked "the brown cake."

Juliana's a little "clothes horse." She absolutely loves clothes and shoes. She's going to be in a dance class starting this week and has real tap shoes, which she loves. And she'll love the class! I can't wait! She already loves to dance around. She has a sense of rhythm, even though we don't know how much of the music she can hear. Her hearing is supposed to be close to normal with her hearing aides on, but she's always taken them off for the day by the time I get there. Also, I leave in the morning before she puts them on. It's hard to tell how much she hears of what I say to her. Some things she doesn't seem to hear at all (her monitor alarm, the telephone), but usually if I say her name loudly enough she'll look. We communicate mostly through signs and gestures, but now it's to the point where I need to take a class in signing. I used to be able to bluff her, but that's not good enough anymore.

I do have some good news to report. There was a long time when it seemed like the suture line over her left mandible (jaw) just wasn't going to heal. Dr. Wolf had removed the external screw, but left a piece of metal inside (for a future purpose). In spite of all the care we gave the site, the incision line wouldn't heal. Eventually the metal inside became visible. Then she had an appointment with Dr. Wolf, but came down with a virus, and the appointment had to be postponed. Finally, though, she had the surgery, the metal was removed, and now the incision line is completely healed. She has a scar along her jaw, but that will be revised later. It's just so good to see it healed. It really did have us worried.

—Jeanne ("Party")