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.

Monday, June 28, 2010

Monday, June 28

Jimmy saw the neurologist this morning, and get this... they called him NORMAL! Clearly the doctor doesn't know him at all.

But seriously (folks), it was great. The doctor was genuinely thrilled at the progress my wobble boy has made, and this was an opportunity to let him be a teaching case for the 12 year old medical student in residence. There were a few weak spots on the neuro exam, but like I said, everything fell within the range of normal. Yay!

He's to be careful for the next couple of months, no sparring at karate, no contact sports.

I asked all the obvious questions -

Do you still think it is/was accute cerebellar ataxia? Yes
Is it going to come back? I don't think so
Is he more likely to develop this in the future? I hope not

Ahhhh, neurology.

He's not yet cleared, there's one issue that the doctor wants to keep an eye on, a thing they discovered during the MRI of his spine and considered an incidental finding because it did not explain the symptoms he had; and he was not exhibiting any signs that would have caused this to be a concern. It is a syringomyelia thoracic - a tubular cavity which contains fluid within the spinal cord. His is between T4 and T10, and the doctor wants to repeat the spinal MRI in about four months to make sure that it hasn't increased in size. Sooner, if he develops symptoms like an inability to control his bowels/bladder, loss of sensation or weakness in the lower part of his body, or back pain; we'll go back sooner. And he just had to leave me with: "if we see symptoms or an increase in size, we'll consult with a neurosurgeon."

In the meantime, Jimmy is doing REALLY GREAT! He is still very sore, especially in his feet and ankles, but he's active and busy and happy, happy, happy! We're winding down the school year and looking forward to planning a celebration for having kicked Ataxia squarely in the butt. You'll all be invited, I'm thinking Skateworld, with proceeds going to the school that never once made either of us feel like a burden or even a particularly significant challenge. It was just Jimmy at school, and I'm not sure they will ever know how important that was for us.

More to come, still. When I can get to it. Those memories aren't going anywhere :)

Thanks for all your love and support!

Monday, June 21, 2010

backing up, Thursday June 17

So, the EEG was really weird. Have you ever had one? We arrived to find that despite the fact that the test had been ordered on April 30, no one had bothered to call for an authorization. So we had to wait a while for that. I had finally received word at 5:30 the night before that Jimmy did not need to sleep during the test. If that had been required, I would have been expected to keep him up until midnight and then wake him at 4:00. Can you imagine waiting for and insurance authorization after that?

They got what they needed within 30 minutes, and we went back to a little room where the tech showed Jimmy all kinds of cool stuff that would be attached to his head, and then he climbed into bed.

Yuck. Flashbacks to other days in hospital beds. But as was the case in any photo of my boy awake throughout this ordeal, he smiled for the camera.

First they marked all the places where the electrode thingies would go:

Then they placed one on every dot and covered it with goo and a square of cloth. There were a total of 24.

The they wrapped the whole mess inside a big bandage and started to record whatever his brain was doing.

At one point, he was asked to blow on a pinwheel for three minutes

Then they turned off the lights and he turned on his side and chilled for about 45 minutes. At the end, they put this strobe light right into his face and made it do all kinds of funky flashy disco rhythms. I asked if this ever sent parents into seizures. She laughed, but didn't answer me.

Then they unceremoniously turned on the lights, pulled off the thingies, and wiped up the goo.

We've got an appointment on the 28th to look at the results. I played that little "what if" game in my head for a little while, until Jimmy interrupted my thoughts by jumping up out of the bed and walking out of the room ahead of me.

And we took our bad hair day to lunch at the beach, where it was rivaled by buffalo cheeks.

Not to be deterred by grease of any kind, we headed back to the hospital right after lunch for our last scheduled Physical Therapy appointment.

Jimmy did great, mastered every test and game she threw at him. It was poignant, there had been so many days when I watched other kids stand on one foot on the squishy dome thing and toss balls into hoops or onto a rebound trampoline while Jimmy lurched around the room with full support. Suddenly, here he was up on the dome, on the treadmill, walking around like it wasn't even a big deal.

It was a big deal.

His muscles are very tight and sore, and he is particularly weak on his left side and in both calves. I argued that his normal activities seem to be enough PT, and she agreed. He received strict instructions to follow her prescribed exercises and stretches for the next two weeks, and to take it easy with himself when he needed to.

Then he graduated.

And started on his home regimen.

Better things, indeed.

BEST things.

Friday, June 18, 2010

Friday, June 18

Hi there! I've got so much to share, so much to say. I'm overwhelmed by the love and support of everyone we see. We are just riding a cloud of euphoria, it still doesn't seem real and yet it is easy to forget that it's been just three days since Jimmy kicked that wheelchair to the curb. I do plan to finish this story and fill in the blanks, for our own archives and also for anyone out there who might face the kind of terrifying ordeal that we've been through. I've got my story of Jimmy's night in the hospital, some of his own journal entries to share, and lots of photos to plug in to all the other stories. As has so often been the case when I sit down to write here, I'm exhausted. Give me a few days to just enjoy the kid, and celebrate his sister's birthday and Father's Day. Then I'll come back and wrap up this saga. Nothing will please me more than to write The End.

Love and thanks to all of you for being there with us and hanging in there as we readjust yet again to a new normal. We like this one very much!

Thursday, June 17, 2010

Wednesday, June 16, 2010

Wednesday, June 16

What a day.

What a D. A. Y.

Yesterday was amazing, I'm still floating. I've hardly had a chance to sit still since then, and I think that once I do, the emotions behind all of this will be overwhelming. I'm keeping it at arm's length for now, there's just so much going on this week!

My lovely niece Erin arrived tonight, and we've got Clara's birthday and Father's Day this weekend! The celebratory mood is palpable around here! Clara is so uncomplicated in her joy for Jimmy's wellness, so happy for the return of her partner in crime. She deserves a great birthday, and we're going to make it so. Bill says his father's day gift came yesterday, but we're going to make a fuss over his as well. But this blog is not about those yahoos, it's about the artist formerly known as Wobble Boy.

I hardly slept last night, I was so nervous about getting him up today, so anxious to see how he stood. When it was finally time to burst into his room, it was the same old: "can I please have five more minutes?" I came out to start on lunches, and when I hollered back for him to get up, already, he came running! God, what a sight he is! He's so TALL and vertical, it's really weird.

We got to school a bit early to get our bearings, he pushed the wheelchair but kept it folded. As soon as he walked in the gate, he was mobbed. A total celeb. His best buddy said: "Now you can do the SWING class with me, it's tonight!" lol. The decision was quickly made to move his class back upstairs (I asked that an adult accompany him on the stairs, at least for today), and then off he went, surrounded by his friends, everyone grinning from ear to ear.

He had a long day, and it seems that he mostly ignored my suggestion to take it easy and rest when he needed to. Wobble Boy is currently Hobble Boy, the kid is SORE. He sat on his butt for eight weeks, then literally leapt up and took off running. When Erin and I went to pick him up, he limped over and another kid said: "Jimmy played basketball today... he's good!"

It's all good. A little wobbly tonight, but I think that's to be expected. Then again, what the hell do I know?

Up and out early tomorrow, anxious to see how he does with balance exercises at PT.

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.

Tuesday, June 15

Remember this?

That is almost exactly how I feel going into PT today after a week off. He's so much more stable that he was last Tuesday, the wheelchair is needed more for speed than basic mobility.

Every time I've commented about his progress, he's had a setback. One of these times, it's going to keep getting better.

This time?