Tuesday, May 6, 2008

The tears at dinner tonight

Blondie had therapy today, and Ms. Kathy thought that she might be ready to try to start eating with her left hand. Now I know that she is right handed (even before the illness), but we are working on trying to get her wrist to turn over. Her hand can lightly hold the fork by itself, but it will drop from time to time. This was our first attempt. On top of that, therapy is followed by an hour break and then a 30 minute ballet class - she is wiped out!

Now before I get angry emails asking me how I could make my daughter cry by forcing the issue, let me just say that you have to start somewhere - and starting something new is darn HARD. Our goal for Blondie is that she have as much mobility as possible for all parts of her body. Right now Brian and I care more than she does because she is only 6. She does want to be able to play with two hands like her little sister, but can't really remember a time when she could do it - she was only 2.75 when life changed. We care because we want as few kids as possible making fun of her in the future - it has already started. We care because we don't want an employer to find a reason not to employ her (even if they say it isn't because of the hand). Folks, we've had countless daycares turn us down because she might be too much work (even though she was walking, talking, feeding herself, and going to the bathroom before I went back to work). We've had teachers stop her from doing things because she might get hurt - things she does all the time at home - or even worse they do it for her. We love her, and we do push - gently- to persevere through things. Therapy does create tears from time to time.

Disclaimer before you watch this: I KNOW to cut children's food, but Blondie didn't want her fish sticks cut up. I explained it would be easier, but this was her choice. The soft restraint is on her right arm and velcros on and off(you can see it on the table).

Just to show that she did cry, watch part two - there is only about 10 seconds between the two videos. This therapy is a long process, and we won't have success every time, but you can be sure when she can do this we'll upload it. By the end she is stuffing the food in her mouth just to be finished, but she really only did about 2 fish sticks. Big Al did have the idea that we try this next time with her e-stim (wish I had thought about it), but she also thought she might need a plastic fork because of electricity conducting through metal (hmmm, glad she thought of that, wonder if its necessary). See, the whole family is involved.

I know there are other parents, and their friends and families, looking at what she does and hoping your child does the same. They will. Be patient, we're in year 3 of therapy, and we have worked through tears (this week) and huge successes (last week). Some kids are able to do things much faster than others, just enjoy the journey and be glad they are here to learn.

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