Funny Harlie

We had a very busy day today. We had to go and get Harlie measured for her new ankle/foot braces (she's outgrown her current ones). Then we had to rush back home for her physical therapy appointment (which went great). And as soon as that one was over, we had speech therapy (which also went great). Right when speech therapy begins I have to go and pick up Murphy from preschool, and when he gets home its crazy. Especially when Beth is trying to concentrate on Harlie's therapy.

Well, back to Harlie's great speech therapy session. She kept her PMV (speaking valve, which we call her "voice") on the entire time - that's an hour, folks (a long time for her). It helps her swallowing and breathing function, which is why it is so important for her to wear it as often as possible. She tolerates it just fine - physically. She just for some reason, likes to take it off. Her hands are closer and quicker than mine, and it is impossible to keep her from removing it. But, she knows that Beth expects her to wear it for feeding, so she does. Which tells us that we need to expect her to wear it all the time and let her know that. At the end of the session, Harlie waved bye-bye to Beth and blew her a kiss. Then she took off the PMV and signed that she wanted down from her chair. So, we said she couldn't get down unless she put her voice on. She grimaced, and it took a few times going back and forth for her to realize that we were serious. So, she put her voice on, we let her down and she went on in the living room to play.

Somehow she ended up in a chair in the living room and took her voice off. Again, we wouldn't let her down unless she put her voice on - and kept it on. So, I asked her if she wanted down. She nodded yes, and then I told her to put her voice on. She would, and I let her down. As soon as her feet hit the floor, she would take it off. Then I would put her back up on the chair. She'd cry a bit and the whole scenario repeated - about 15 times! At one point I grew tired of the whole ordeal. So, when she got down off the chair and took her voice off, I just looked at her. And she turned around and climbed back up on the chair totally on her own!!! It was hilarious!

She finally gave up and left her voice on so she could play. I guess it pays to be consistent. But oh boy it takes A LOT of energy!

Well, that's all I have time for tonight. Talk to you later!