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?

Sunday, June 13, 2010

Sunday, June 13

Whew, it's been a busy weekend!

Jimmy is doing fine, getting around pretty well with the walker, trying feats of unparalleled risk and fear in the backyard with a tumbling mat and his wheelchair.

He enjoyed the roller coaster at Seaworld about fifty times on Friday night, I kept thinking about how I'd been scared to let him ride the little coasters at Legoland when we went on that first outing in the wheelchair. That was about five years ago, right? I was so afraid of making things worse at that time, worried that the force of the rides would knock another screw loose! Now I've just thrown my hands up, what possible harm could it do?

That logic was most likely at play when I agreed - albeit begrudgingly - to let the boy go ahead and try out the bouncey house at a weird little festival we stumbled upon down at Qualcomm on Saturday. Please recall that this very same child fractured his tibia in a bounce house when he was five. Yep, broke his leg on all the air in there. So I was sort of anxious about letting him do it, but he and his sister wore me down. As soon as they both emerged uninjured, I was really glad I'd said yes.

It took Jimmy about 12 seconds to figure out that he could get enough momentum bouncing on his knees to do flips. And then he just went nuts, throwing himself around the thing like he was a sock in the drier. He got up on his feet and jumped with all of his might, bouncing off the walls and hooting and hollering and having the time of his life! I figure if nothing else, it was good Physical Therapy, right? But can you imagine if he broke his leg and I had to bring him to the ER and explain everything?

We are back to waiting for approval to continue PT, he has two sessions scheduled this week, along with an EEG on Thursday. I've received conflicting information about instructions for the EEG. When it was ordered, the doctor said that it would be done when he was awake, but I've gotten three seperate instructions that tell me that he needs to be able to sleep for the test, so I should put him to bed at midnight and wake him up at 4am. Craziness. I spoke to someone from the office who assures me that we'll get it sorted out before Wednesday, and we've got an appointment scheduled for the 28th to go over the results.

So, on we roll! Wasn't it great to see the sun this weekend? Enough with the June gloom, bring on beach weather!

Thursday, June 10, 2010

Thursday, June 10

The fact that Jimmy's Physical Therapist is on vacation does not mean that he gets to slack off.

Working out at home, we have our ups

And our downs

He got to play wii fit during PT the other day, we'd like to practice at home but first someone's got to unlock the sitting yoga games.

A mother's work is never done.

Tuesday, June 8, 2010

Tuesday, June 8

How shall I begin, if not with: "sorry for not updating"????

I am. Sorry, that is. I know that I've created a situation in which people are hesitant to ask me how it's going, so they come to the blog, and there's nothing here.

Believe me, when there is encouraging news to report, I can hardly wait to get online and shout it from the rooftops.

Days like these, however, are more complicated. It's not discouraging, per se, but it's so confusing and inconsistent and mysterious. I'm just sick of myself whining about it. I am exhausted and frustrated and mystified and conflicted and ineffective and impatient and skeptical and scared and resigned and just so very tired of all of... this.

I want my Jimmy back.

Sunday, June 6, 2010

Sunday, June 6

Sorry for the lapse in updates! I've been distracted by a hellish household electronics vortex of horror.

It's been a rough couple of days for our young hero. If Wobbles were a superpower, he'd surely save the world. He's been unable to use the walker at all since we brought it home, he can't find that elusive balance point. Blah, blah, blah.

We tried out the motorized wheelchair at Mission Beach, those things are pretty sweet! The attendant tried to tell me that he could only use the manual chair because the electric ones were reserved for people with permanent disabilities. I did my patented vapid blink at him until I figured out that he was assuming Jimmy had a tweaked knee or something (no, his mom's the one with the bum knee). When I assured him that our wobble boy's predicament was legit, he hooked us up and also gave us a bunch of cool info about camps and programs we can look into over the summer.

Tonight Jimmy got really mad at Clara for riding her bike. It seems that they'd made a secret pact that she won't ride until he can, too. Sweet, so very sweet - but also so very not fair. They both had friends over and he had just terrorized the girls away from the vicinity of his video games.

My sister Ellie texted me that she knows someone who has a child with a very similar story. She's going to put us in touch via email. You have no idea how badly I need to hear every detail. One of the most frustrating aspects of this ordeal is that no one shares it; there's no one to compare stories with, no real life happy ending to give us encouragement when everything seems overwhelming. Now would be a really good time for a success story.

On a lighter note, Jimmy received an awesome get well card from his Great Uncle Dave. The card itself made him laugh because it said "poopy," and inside was a $10 and the note: "James Kennedys are tough. You'll get through this. In the meantime, buy yourself an ice cream on your old Uncle Dave." Bill's dad - Dave's brother - is also James Kennedy =)

Highs and lows, on we wobble.

Better things tomorrow?

Thursday, June 3, 2010

Thursday, June 3

Home from PT, he's making good progress. Walking back and forth across the room (wearing a belt for the person supporting him to hold onto). We were able to bring home the front wheel walker to practice at home, it's the best exercise we can possibly do to keep his legs strong, and the more he is upright the better. In my humble opinion. It's easy to forget that we are still not quite yet back to where he was during his "upswing", when I wrote those cursed words that jinxed us right back to super-wobble status.

In the car this morning, he told me a lovely little story about taking a header out of the wheelchair at the park yesterday while a friend was running and pushing. His biggest complaint about the incident was that his friend got in trouble. Can you imagine being the teacher? Hilarious.

All in all, things are encouraging. There's a big head game at play here, and it's not just his cerebellum. I'm thinking about asking for a few sessions with a counsellor so he can vent a little and express what must be complicated and intense emotions and fears.

Anyway, here's the letter I wrote to the dojo yesterday by way of explanation. Rita, you are so right about the "telephone" syndrome, I can only imagine the tales being told.

To our friends at USAFMA,

We want to thank you so very much for the opportunity to go and see the advance screening of the Karate Kid last night. What a great movie! It was good for Jimmy to see everyone again. It hadn’t really occurred to us that most of the kids had no idea why he stopped coming to Karate, and were surprised to see him in the wheelchair. I thought it might be helpful for you to have more information, which you can choose to share with anyone who is asking about Jimmy’s condition or prognosis.

We are working under the assumption that his diagnosis is Acute Cerebellar Ataxia.

From the National Ataxia Foundation:

"The word ataxia means without coordination. People with ataxia have problems with coordination because parts of the nervous system that control movement and balance are affected. Ataxia may affect the fingers, hands, arms, legs, body, speech, and eye movements. The word ataxia is often used to describe a symptom of incoordination which can be associated with infections, injuries, other diseases, or degenerative changes in the central nervous system."

In Jimmy’s case, there is no clear cause for the onset of these symptoms, which is somewhat troubling. However, he has had every test in the book including a CT scan, MRI, Lumbar puncture, and exhaustive blood and urine testing and nothing has been found, which is VERY good news. They looked for tumors, strokes, nerve diseases, MS, and lots of other scary
stuff that I can’t pronounce. So, we assume that there was a viral infection at some point that triggered the Ataxia.

Ataxia usually goes away without any treatment within a few months. It is extremely rare that there are continuing or disabling symptoms. Jimmy's symptoms began on April 20, six weeks ago. He has had a few brief episodes of improvement, but has generally stayed about the same since he spent the night in the hospital on April 23.

Jimmy is under the care of a pediatric neurologist at Rady Children’s Hospital, and is undergoing Physical Therapy twice a week to keep his muscles strong and work on improving his balance. His legs work just fine, the area that is affected by Ataxia is his trunk, and when he stands or sits upright without support, he experiences what they call retropulsion, which looks like a sudden backwards movement from his trunk. As he tries to correct for this movement, he often lurches forward and because his sense of where his body is in space is impaired, and he falls. The wheelchair allows him to participate fully in school and most community activities, but what he really wants is to get back to karate!

That’s the condensed version! Please feel free to share this information as you see fit.

Jacquie and Bill Kennedy

Thanks for reading, and especially for commenting (hint, hint).
Better things.

Wednesday, June 2, 2010

Tuesday, June 1

We left the house at 8:45 am yesterday, and got home at 9:45 pm! No time to update. For the record, we give the new Karate Kid remake two enthusiastic thumbs up despite the fact that we didn’t get homework done and everyone in my family was a big heavy grump this morning.

Bill came along to PT for the first time, which lightened the mood a little bit. Jimmy acts so differently there, I know this particular therapist was recommended for Jimmy’s specific case, but I sometimes wonder if a younger, sillier PT would get more out of him. He complained that she talks to him like a preschooler, and I told him that if he starts to acts like himself, she will get to know him and they can have more fun doing things that are geared toward his interests and abilities. She had him up and walking more than any previous session, using the walker with a belt around his waist so she could support him. We might take the walker home with us this weekend for practice.

The movie was an advance screening with the gang from our Karate dojo. It was the first time Jimmy had been around these kids since this whole mess started, and it was a little awkward. It hadn’t occurred to us that the kids would have no idea why he hasn’t been to karate, so they were surprised to see him in the wheelchair and were quick to ask: “What happened?” Of course, there’s no quick reply to that. He’d go into this “um, well I can’t really walk because I lost my balance” or “I have cer-a-bel-axia or something.” I still think he needs to come up with a better story, something interesting that discourages additional questions, like: “I fell from the tightrope” or “I’m waiting for a butt transplant.” Any suggestions? I overheard one little girl telling her parents: “you know that kid Jimmy? He’s in a wheelchair and the doctors don’t know why!” Ugh. I’m going to send an email over to the dojo later to explain a little bit more of the situation so that they can answer questions.

So this morning he was impossible to get out of bed, and he was just a mess of tired. He begged and pleaded to go back to bed, he said he was too weak to even go to the bathroom, he was completely woebegone. Of course, I start to worry that something new is going on, his muscles are degenerating or he’s developing one of those horrible diseases that they tested him for. I made a plan in my head to call both docs and ask about repeating tests, etc. Then I sternly told my boy that I was not staying home because he was tired, so suck it up. Once he got dressed, we had 10 minutes so I suggested that he take a power nap before we left for school. I stopped running around and tucked him in on the couch and rubbed his forehead and spoke softly. He closed his eyes for those 10 minutes, and was miraculously restored. It’s very difficult to distinguish between the typical behavior of an 11 year old boy and the manifestation of a neurological disorder. They are mutually exclusive.

We are awaiting a replacement wheelchair and copies of his outpatient records, which were not included in the first set I received. On we roll.