Lola usually likes to go a few weeks in between her new tricks just to string us all along. Steve just said that he was hoping for something "new" to keep us going....to keep us hoping. Today at physio, we tried Lola out in a standing frame to see how she'd do. We were initially told she "wasn't ready" and that it would be "a while later" until we'd get to try it out. I convinced them to try it, and after a week of measuring, a week of no physio, we got to today. Lola loved it! I was kicking myself for not bringing a camera. She was initially hesitant to get put into it, but she didn't resist too much (surprising, really). She loved to look at herself in the mirror, and play with all the toys. After about 20 minutes in the stander, she had some playtime on the mat. Lola amazed us all by turning herself around 360 degrees in order to play with all the toys at once. She then scooted herself forward by putting her weight on her hands and kind of hopping forward. I couldn't believe it! When she couldn't reach the toys, she reached for the arm of one of the therapists and looked at her pleadingly - as if to say, "Can you get that for me?" It was the cutest thing. She did it a few times. She's trying so hard to communicate with us. The speech pathologist asked her, "Where's Leni?" and Lola looked wayyyyyyyy across the room to find Leni, and gave her a big grin. Then she asked, "Where's Mommy?" and Lola looked right at me and said, "Um." She did this twice. So who needs the second 'm' in Mom? I'm now just plain "um." So those were all of Lolly's amazing feats today. She's been pretty crabby since we got home - I think she's becoming more and more aware of her limitations and can't figure out how to tell us what she wants.
Yesterday she had her eye exam. First she met with an optician, who did a variety of stimulus, etc. tests. At one point, she was testing her peripheral vision, and came up on Lola's right side. Lola didn't even take her eyes off the TV as she batted the toy out of the woman's hand. She said, "I don't think she's got anything wrong with her peripheral vision" as she chuckled. Next we met with the Opthomologist (sp?) who did a bunch more tests. Lola does not need glasses, there is nothing wrong with her eyes, or with her eyesight, or with her brainstem response to visual/auditory stimulus. This is amazing to hear. We've been worried about what she can see, if close up stuff bothers her, etc. So far so good! She goes back in Sept, and Dec. The best part of this visit was what the eye doc shared with us. She started by saying, "Well, you guys have had a really rough go." I just did the usual, "Yeah, but she's doing so much better....blah blah blah." She said, "Don't listen to all the negative things doctors try to tell you. They don't know everything. Especially the neurologists. There is a lot that they haven't seen, and that studies can't show them, so they make educated assumptions in some situations. I've seen families devastated by what they've been told, only to have their child bounce back completely - shocking everyone. Trust your child. It's the feisty ones who come back to us. She's on her way back." Now, I don't know this woman - we'd never met in the hospital, and I didn't mention my dislike of "some" of our team. It was so amazing to hear her say these things - just when I needed a pick-me-up.
I will trust my child. I know she's coming back to us. This is my lesson in patience.
