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At age 11 and out of the blue, Jimmy lost his balance. His diagnosis is Acute Cerebellar Ataxia. He is currently wheelchair bound and we are working hard to find whatever it is that we need to fix. Here's where I'll try to keep everyone in the loop about what's going on.

Tuesday, June 15, 2010

Yes, this time

I sometimes dreamed about how I'd write this entry when the time came. I imagined that I'd be eloquent and dramatic and humble and smart. But now that it's here... it's here ... I can't find words. All I can do is grin and marvel.

Let me back up. We went to physical therapy today as planned. I tempted the gods by sneaking in a quick a word here about feeling optimistic because it was clear that Jimmy was doing much better. We had some extra time getting over there, and he started to fantasize about the snacks we could enjoy while waiting for our appointment. But the traffic was unbelievably horrific, like not moving a single inch for 10 minutes bad, and being ME I kept trying new routes instead of just waiting it out. If you're familiar with the part of town where our beloved Rady Children's Hospital sits, you know that it's a pit of despair where traffic is concerned. Eventually, I parked in the structure next to the ER and we hoofed it. Well, I hoofed (hooved?) it, he rolled. We were late, so as I checked in I told him to head back to the treatment room and get started. By the time I got back there, he was telling his PT that he was doing a lot better, and hardly using the wheelchair at home. I told her that he was ready for a challenge, and she was all in.

She got him up on the stationary bike for a while, then had him do some floor work on a horizontal ladder. He started by walking through the squares, she held on to him and he was wobbly, but able to recover. Then she had him side step, then hop. Next they headed to the mini trampoline where he did some cautious jumping. He held on to a bar and had a bit of a hard time. Then they moved to the total body gym thing he's been eyeballing all these weeks, where you squat on a surface and your body weight raises the apparatus as you rise from the squat. He was working his ass off.

Finally, they headed back to a raised table to stretch. She had him walk, and kept her hands on his hips. Then she dropped one hand. Then she dropped the other. She kept a loose hold on his elbow, and he was walking. He wobbled magnificently, but he was walking. She took a detour over to a reebok step (just like the one in Paco's class), and asked him to try stepping up and down. She stood behind him with her hands on his hips.

He stepped up.. wobble
He stepped down... wobble
He stepped up... wobble
He stepped down... wobble

Soon we all noticed that she was no longer holding on, and he was no longer wobbling. Later, he told me: "It was like my brain remembered that I could do this!"

He walked across the room to me, and I proceeded to melt into a tiny little puddle of goo.

We left the building like this


And a little while ago, he called to tell his friends like this




I know.

It's surreal, is this really it?!

I keep telling him not to freak out if he feels a wobble here and there, and I feel the need to remind all of us that if we've learned anything from this ordeal, it's that we should expect the unexpected. He still can't stand on his toes, and I see him catching and correcting himself. But something has clicked, and he's back.

Okay, so maybe I could find the words....

Unbelievable. It's been eight weeks to the today.

16 comments:

  1. michele duncan-maxwellJune 16, 2010 at 5:29 AM

    Awesome! This has brought tears to my eyes. He is gorgeous and lucky to have such wonderful parents!!!

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  2. Oh my God Jacqueline. I'm a puddle too. You're incredible. How do the bad writers get their point across?

    Sorry. Really. You're amazing and he's amazing and the whole thing is amazing.

    I love you.
    Ellie

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  3. now I'm a puddle of joy and marvel, all at the same time...mixed with gratitude and relief!!

    thanks for sharing it all!

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  4. I thought the same thing, Ellie, about the bad writers! Jacquie, Bill, Jimmy, Clara--great great news and lots of luck and love to all of you!

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  5. Looking Great! Continued good health. julie

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  6. awesome!
    fantastic!
    wonderful!
    supercalifragilisticexbealidocious (I am quite sure I spelled that wrong.)

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  7. Yay, Jimmy!! I'm so happy for all of you. Yippee!
    xoxox

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  8. YAAAAAAAAAAAAAAAAAAAAY!!!!!!

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  9. I am crying. Tears of joy, for you, and for Jimmy. And Clara. and Bill. And, jesus, for the whole damn universe.

    What a fucking wild ride.

    Congratulations to wobble boy.

    And to you? I don't know, the most giant kudos for being so brave and strong and eloquent and amazed and resourceful and persistent and smart and funny and adaptable.

    I love you guys!!!!

    Beth

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  10. Thats is SWEET!

    Duke Drydocker
    (Rhymes with Luke Skywalker)

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  11. dymphna andersonJune 16, 2010 at 3:14 PM

    Thanks to be God!
    Enjoy the joy!

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  12. YAY!!!!! WE love you guys! so SO happy about Jim. Good luck on everything manana. X

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  13. prayer works!!!

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  14. Awesome and exciting news! Congratulations to all of you!

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