Monday, June 4, 2012
I'm back in Kansas City this evening after spending a really good day with Alison. She had a very full day, but did really well in all of her therapies. I arrived at her room before 7am this morning to find her already awake. But she was in good spirits for being up so early. We watched some Good Morning America before her wheelchair assessment at 9am. During that, we basically went through every option for a wheelchair and discussed what she'd need. We'll then present our custom wheelchair to the insurance and, if approved, it'll be ready in a few weeks. Surprise, surprise, the color of chair we picked was bubblegum pink. : ) They've begun using a different head piece today that seems to be working pretty well. It's been a constant challenge keeping her head in a good position, but this just might do the trick. During her PT/OT cotreat session, she continued to show improved balance and core strength. She still needs help keeping her head up, but she's sitting upright almost entirely on her own. During her speech therapy session, she worked on eating real food! I'd been practicing with frostys and pepsi every now and then with pretty good luck. So today, she had thickened grape juice, strawberry yogurt, applesauce and orange sherbet. She had a couple bites of each, and indicated with her eye blink when she wanted more. She was able to open her mouth, take it in, move it around and swallow. So she did everything they were hoping she'd be able to do with it. When she took a bite of the sherbet, she made the funniest face. Her eyes squinted and her nose scrunched up and her head turned to the side - almost like it was sour. I'm pretty sure she got a bit of brain freeze. But a few seconds later we were laughing about it together. Then in her individual occupational therapy session, she was doing well with keeping her eyes centered and indicating with her long eye blink the correct colors and numbers of beads that were presented in front of her. Her eyes typically stay down and to the left pretty severely, so it's important we work on getting them more engaged in tracking. Tomorrow, the eye doctor will sit in during the OT session and observe. He's evaluated Alison before with little success. If she does as well tomorrow as she did today, I'm hopeful he might take interest and have some ideas to help. Overall, it was a pretty good day. It's always hard to leave, but she's in good hands there. And her brother is there with her for the next couple of days. This week we'll wrap up the details in getting our house ready to list, so that'll keep me busy. Thanks for all of your continued support.