The leg bone's connected to the head bone?

Jan. 31, 2010

Well, our intensive therapy sessions are now over and the home program begins. I don’t know if it was a good idea or a bad one to be instructed to take the rest of the week off. On one hand, it allowed us to all get some much needed rest, but getting out of the routine allows us to slip into our old ruts. That’s the last thing we want, as the last four weeks have been so productive, we really didn’t want to see it end, (just move a little closer.)

The February banner features what could be considered to be the closest thing to a family picture that we’ve had taken in the past two or three years. It captures January 2010 in a perfect form. It was taken by Lisa, our PT at Leap Beyond Therapy on the last workout day of intensive therapy. It shows Nathan looking anywhere but where you want him to focus, and encapsulates a lot of other little things in that medium order of fries.

I don’t know how many times, I’ve laid on the couch watching TV and not really wanting to watch the show that’s on, but with the remote six feet away, those six seem to be half a mile. Without the motivation to get the remote, I lay there, not being productive and not liking the situation. Eventually moral conscious wins out (I didn’t say quickly, but eventually) and I move and get myself going again.

I can only imagine that intensive therapy had moments like that for Nathan. Working the weights, pulling between 15-25% of his body weight, was rough and he didn’t seem to see the reward, until later. Then some magical things started happening. With stronger arms, it wasn’t such a struggle to bring his hands to his mouth and try eating those things he was only holding before. With stronger legs, he could roll across the floor, down the ramps at gymnastics, or at school and move faster than he had before. He now knows that if there’s something he wants, just maybe, he can do it himself.

Annette and I ate a lot of fast food over those many trips and hours in the car. Nathan would either sit in the restaurant in his chair, or in his car seat and just watch us eat. Day after day, french fry after french fry, he’d look at us and think, if they can get things in their mouth, I bet I can too. Via a soft sigh from the back seat or a single pound on his tray, he’d get our attention and bring an empty hand to his mouth. It was his way of saying “Can I try a fry? I promise I’ll try hard this time.” You can say “practice makes perfect”, or “I just want to do/eat what my mom & dad do/eat,” but bless him for his desire to try again.

One trip back, we knew we were going to stop off at a specific exit, as they had a McDonalds that was close to the freeway. Both Annette and Nathan had fallen asleep and I gently woke Annette asking if she still wanted to stop. It was her only chance of getting food as she was heading straight to work so she said yes. Nathan stayed asleep until I pulled up to the speaker, rolled down the window and placed the order. He had been holding tight, even asleep, a toy in each hand, but I saw him reach one out for me. I thought he wanted to trade for a new one so I grabbed him something else. He took it, looked at it and handed it back. Annette and I looked at each other and knew exactly what was on his mind… he wanted to have an open hand for his fry.

This is the child who we were told, “would smile only as a reflex and not try to show us that he’s happy.” The child with moderate to severe PMG probably covering almost 80% of his brain, who is still trying to squeeze out every little bit of the “good” parts left. The child that at the beginning of 2010 couldn’t communicate his needs or wants, but now is getting his point across, loud and clear.

Don’t get me wrong, when he returned to school, he would turn to the teacher and all of the helpers in the class, lie on his back and wave his hands trying to get someone to pick him up. As if saying, “I want to get to that table over there, it’s only six feet away.” (I guess he does take after his dad.) He’ll flash a smile and try to sucker them in, and if you say no he’ll try to get another's attention. Once all of the options are exhausted, he’ll roll on his own in a matter of seconds. He knows full-well that he can do it now, but it doesn’t stop him from trying the easy way.

Thank you again to all of the great people at Leap Beyond Therapy for opening so many new doors for Nathan. When you have the inner (physical) strength to accomplish the goal, the mental desire is all that’s necessary to make what was impossible, well within his grasp.

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