Monday, March 18, 2013

Chapter 8: The Miracle of Bruce

Kayda’s 5th birthday was at the beginning of December. We went all out and invited several of the children that I’d cared for before having Kayda as well as their parents. She wasn’t very well on the day of her party. She was so gurgly we had to just sit her in her chair long enough to take a couple of pictures and then lie her down again. We all had fun though. Presents were sure hard to find. What do you give a child who has never shown an awareness of anything? I did find a Disney toy that was a ball with different coloured lights and bars that played songs with only a gentle touch. It could be activated “by accident” which is what she needed. She was moving her hands more at this time though and was quite good at pushing away anything placed on her tray. I don’t think the ball really liked being tossed to the floor so many times. Then came Christmas and another gift finding challenge. I found the Disney Dancing babies toy that was voice or sound activated as well as touch activated. I also decided to get her a Fisher Price Dinoroar named Bruce. I figured that I could put it under her arm when she was lying on her side and maybe one day she’d learn to squeeze it voluntarily to hear the noise it made. Clothes and pretty stuff made up the major part of her gifts. Shortly after New years I put Bruce under her arm and for some reason put him up to her mouth. She touched him with her face, turned her head away and then back again and started to chew on his nose. That one act changed Kayda’s entire life! By the next day she had figured out how to pull Bruce to her to chew on and push him away when she wasn’t interested any longer. From that day on she started to show an awareness of individual toys and started moving her hands in what appeared to be purposeful movements. I remember one day when I was bathing her, her hands kept touching the sides of the tub. I thought they appeared purposeful but told myself I was imagining things. Doctors kept reminding me that she had “no brain” thus no awareness of her surroundings were possible. Well, I soon became convinced they were wrong and that she knew exactly what she was doing with her hands. I noticed that she liked to compare textures. She’d run her fingers over her shirt and then over a toy and do that over and over. She also started batting at things that were hung over her sidelyer. While Bruce was obviously her favourite toy she liked to feel other toys as well. He became her soother and she chomped and chewed and sucked on him all day long. She became much like a teething baby and liked to explore anything within reach with her mouth. One night when she was in bed I heard this weird sound coming from her room over the monitor. I couldn’t figure out what it was and ran down the hall expecting the worst. She was asleep, and was sucking on her tongue!!!!!! We discovered that if we strapped him near her mouth when she was in her wheelchair she would be quite happy sucking on him no matter what we were doing. We started being able to go out more as she wasn’t nearly as noisy and disruptive. Her breathing was improving as well. She’d had no illness since the beginning of December. Her breathing was clear when lying down and most of the time when sitting, especially if we were in the van. She liked van rides as long as we didn’t stop. I kept asking the social worker for either a police escort through red lights and traffic jams or a helicopter and for some reason we never got either. Before Christmas it had been decided by the OT and speech person that most of Kayda’s gurlginess was saliva rattling around in her airway. One day they observed her for nearly an hour and counted only about 2 swallows. After a couple of months chewing on Bruce and anything else she got her mouth on, we noticed she wasn’t drooling nearly as much and was swallowing. That crazy kid had taught herself to swallow as well as how to suck and chew!!!!!!!! She wasn’t supposed to be able to do any of that. I know that I got weird looks from Doctors when I’d tell them what she was doing. They thought I was totally out of touch with “reality”. That’s when I realized that with Kayda there are 2 realities: the doctors and medical tests (no brain, a vegetable) , and mine (wonderful and talented). I just kept quiet and let these pessimistic people discover for themselves how much Kayda was aware of and could do. In addition to learning to swallow, chew, suck and use her hands she was starting to move the rest of her body. I learned the hard way that she could roll. On Christmas Eve I had put her on her side lyer which was up on the couch. I think I realized once she was there that I’d forgotten something or other and went to get it. I turned my back for half a second and she rolled onto the floor. Poor Kayda! She cried just like any other child would which negated what the doctors had been telling me-she couldn’t possibly feel pain or cry from it. Shortly after Christmas she started rolling from her side to her back and on to the other side. She never quite mastered getting all the way over. She could also move on the floor by kicking her feet. I noticed too, that in the morning she was no longer in the position she’d been in the night before. She just laughed when I’d comment on that. She was such a happy girl and was so responsive to everything and everybody. She was blossoming! She still felt that her main purpose in life was to be held.

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