info

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.

Monday, May 31, 2010

Monday, May 31

Happy Memorial Day!

Not much news to report from camp Wobble, things remain about the same. It's been a busy, fun-filled weekend of beach days, boating with dear friends, a padre game, and the general business-as-usual that long summer weekends promise. Sort of.

I can't even begin to tell you how awesome it is to have free access to things like sand wheelchairs, not to mention the cute lifeguards who fetch them for you. I love San Diego.

Clara's down for the count with a stomach bug, fingers crossed that it doesn't make the rounds.

I received Jimmy's medical records in the mail on Saturday, everything from the testing that was done in the hospital. Apparently, I need to submit a separate request for the outpatient stuff, which includes the second round of blood tests (I do know what was tested, just don't have results) and the lumbar puncture. If you think you could have any insight into what these tests might reveal, please do not hesitate to email me and I'll send you the scanned pages. If you don't have my email, just leave a comment and I'll get in touch.

Thanks everyone, enjoy the beautiful day!

Friday, May 28, 2010

Friday, May 28

The start of summer sure brings mixed feelings this year... although there are a number of cool sand-friendly wheelchairs available to borrow at the beaches, it's not going to be the same with Jimmy unable to swim, boogeyboard, or even just run around. Hopefully that won't be the case for long, but it's feeling less likely that his situation will improve significantly in the near future. As for the immediate future, we're going to stick to pools this weekend.

Physical Therapy was hard work for him, but he is willing to try anything and doesn't complain (until we get home). The therapist who saw him for the eval last Wednesday worked with him again, and it must have been a shock for her to see how things have changed in those few days. We've been through these ups and downs --- well, a lot of downs and almost one week of ups --- but she had only seen him during that fleeting "up", so she got a real look at what we're dealing with.

I scheduled his remaining 5 authorized visits - she is not at all concerned with the issue of extending them, we'll do that after the 3rd visit. We'll be tehre on Tuesdays and Thursdays, and I initially tried to work around what was convenient for us and did not require missing school, but I got a call later that evening to change some of the later appointments we'd made because after consulting with the doctor, she wants Jimmy one-on-one for each hour long session, and she wants to be the only one who sees him. I'm glad that they are paying attention, heartsick that my boy needs such specialized care.

He was exhausted last night, the PT said to imagine that he'd spent the full hour doing jumping jacks, because that's how hard his body is working just at the simple simple tasks she set for him. We were encouraged that just with the techniques and coaching she offered during that hour, he was better able to stand with support by the end of the session, but we're still not anywhere near ready to size him for a walker.

As for me, I'm feeling very antisocial with people. I almost want to avoid seeing people because I'm tired of blah-blah-blahing about all of this all of the time. It's hard to switch gears when I'm at work or at the gym or out shopping and someone stops me with questions. I want to welcome them, there's a part of me that wants and needs to continually talk about this thing that is always right at the tip of my consciousness, but I guess I just need a break sometimes. I have a hard time answering techinical or medical questions, especially when the person asking clearly knows more than I do about the subject. I've got trust in his medical care - not blind trust, but trust nonetheless. So if I am unable to answer your questions about which tests have been run and what the exact results were or what the doctors' opinions are, it's not because I haven't been paying attention, it's just that with so many details and emotions jumbled up into the mess of these last five weeks, I can't always come up with specific information. Once I have those medical records in hand, believe me you are welcome to review them. In fact, I'd very much appreciate it. In the meantime, let's talk about other stuff, okay?

Have a great weekend, everyone!

Thursday, May 27, 2010

Thursday, May 27

PT authorization came in the mail today, Rady had yet to receive the letter but when I called, they put me on hold while they verfied, and then we started to look at the calendar, and what do you know? Our therapist has an opening today at 3:30! Yay!

Next, we'll deal with the issue of six authorized visits with a recommendation for therapy twice a week. Don't mess with mama bear, people.

Tuesday, May 25, 2010

Tuesday, May 25

New wheels:

Can't wait to get rid of them.

Monday, May 24, 2010

Monday, May 24

I find myself avoiding these updates when I don't have anything good to say.

This is one of those times.

He's just as bad as it ever was at its worst. He can't manage the walker. He asked for help getting into bed.

On the other hand, he's adapted so quickly to life in a wheelchair - you should see how he launches himself out of that thing toward whatever he's after. He's been playing hoops in the back yard, and he jumps out of the chair to shoot and then tumbles down onto the grass, which has gone so long without mowing that we call it "the meadow". He's not fragile, he's not afraid to crash and burn when the momentum of forward motion stops keeping him upright. He's actually using some of his martial arts training to fall well, just tonight I complimented him on the judo roll he enacted when he fell from being on all fours.

Now see this? I avoid writing when things suck and I'm down, but once I start writing I feel much better, and naturally start thinking more positively. You tricky blog, you.

So, because the gods are cruel and clever, I got a call at work to ask if we needed the wheelchair delivered today. Naturally, the one I picked up on Thursday only rents on a monthly basis. Naturally, he hated the new one right off the bat and we had to go through that whole damned scene again. It's much lighter that either of the other two, which makes my poor old lady back very happy. I still say let's not get too comfortable in the wheelchair, we need to stay motivated to get OUT.

I was encouraged by the speed with whihc the wheelchair came through once it was requested by PT and approved by our pediatrician. I called the PT scheduling desk to see if that approval had been similarly efficient. No one called me back. Yet.

I also sent out a barrage of emails after embarking on a covert email address seeking mission. I'm starting with California, and am cautious to tread lightly so that I don't waste the opportunity of anyone's attention without all the relevant data. The head of the Ataxia clinic at UCLA actually wrote me back a one line reply: "let me know what blood and urine testing was done." Yes I will, good Doctor! I ordered a personal copy of his medical records early last week, so hopefully I'll be able to let her know about that pretty quickly.

So, onward. What I need is a plan. If he is not better by________, we'll do_________.

Who can fill in those blanks?

Saturday, May 22, 2010

Saturday, May 22

Busy day today, Jimmy and Bill had a very fun adventure in Laser Tag, and then Jimmy went to play at a friend's house for a while. When he got home, he and his sister enjoyed some serious wrestling on the tumbling mat. I couldn't even watch. He kept saying: "if I could stand up, I'd SO beat you." She's pretty tough, though. The dog got in on the action and one of them might end up with a black eye tomorrow, I'll let you guess which one.

Wobble Boy is very wobbly today. I keep reminding him (and myself) of our mantra: it's not going to be a straight line to recovery. It's scary and discouraging, though.

I want to say thanks for your comments, both here and via email, facebook, etc. It really means a lot to hear encouragement and good thoughts from people in so many different parts of my life. I very much want to reply to each of you individually, but I've not been able to find the time. I do want to thank you though, from the bottom of my heart, for checking in on us and for caring so much about me and Bill and Clara and our Wobble Boy.

Several people have said to me that I'm strong or that if anyone can handle this, it's me. I really do not feel strong, I feel tiny and weak and helpless. But there's a kid looking to me with his big blue eyes for reassurance and guidance and yes, even strength. So I'll handle whatever comes our way if it means that he can keep smiling and finding the pure joy in things like bodily functions and armpit hair.

On to tomorrow. Goodnight!

Friday, May 21, 2010

Friday, May 21

Sorry about not updating yesterday, did everyone just assume that I’d finally gone ahead and jumped out the window? We were all a little down in the dumps after that disappointing PT assessment, but today is a new day and we’re back to looking on the bright side.

Got a lot done yesterday; it went a little something like this:

Call neurologist, as discussed with PT, to let him know that the PT report and prescriptions for a wheelchair and twice-weekly sessions would soon be crossing his desk, and we’d appreciate a quick approval. Result: Left a message.

Call medical supply company suggested by PT to ask if they rent pediatric models. Result: They don’t do rentals.

Call PT just to check in and make sure that the report was being submitted today. Also asked what else I could do to expedite the approval of PT so we can get started right away. Also informed that suggested vendor does not do rentals and ask for guidance to find one who does. Result: left message.

Return call from PT, report in hand. She gave me the name of a medical supply company who had two chairs in stock that might work, one slightly too small and one slightly too large. She reiterated that although I had requested a walker or cane, she could not yet recommend these things based on her assessment. We can do that later (because it’s so easy to get stuff when you need it). Confirmed that I had called neurologist to inform him that stuff would soon cross his desk for signature. They are in the same building.

Another call from PT, noticed my insurance provider – thinks they will require authorization from primary care physician rather than specialist. Discussed how it’s easy to get a direct message to the neurologist and he calls back within 24 hours, but at the pediatrician I know the numbers to get a human person on the phone, and that’s always better. Note to self: PT is awesome.

Call pediatrician, get human person on the phone who agrees to write my message down and put it on the doctor’s desk. The message is that two items will soon cross his desk for approval.

Call medical supply place, verify that now is a good time to come in.

Pick up Jimmy from school, take him to the extremely weird medical supply place. He fantasizes about getting a tricked out wheelchair . Arrive at medical supply place, see wheelchairs, cringe. The pediatric model fits his skinny frame, but this is a kid who insists that his size 3 feet are really a 6 and that all of his jeans are “tiny”. The “narrow adult” model is just like the one we’ve already got. We take the pediatric one. He starts bitching about it before we even get to the car.

Take Jimmy back to school, where he refuses to get out of the car and into that stupid tiny wheelchair. He likes the old one. I do not accept this refusal, agree that if he still hates it by the weekend, we’ll keep looking around.

Back to work where I am generally unpleasant and surly to everyone. Called my husband to warn him against saying anything other than “what an awesome chair!” when he goes to pick the kids up from school.

Rushed to the gym for a TKB workout. Bliss.

Missed three calls during that one hour class, two regarding Clara’s upcoming birthday party, one from Bill who wants to know why I’m freaking out, Jimmy loves his new chair.

Breathe.

Meet up with the family for dinner, then go home and enjoy a rousing game of murderball in the back yard.

Help Jimmy with his PT regimen, showing Bill and Clara the moves. Try to convince the dog that just because the boy is on the floor, he is not playing.

Homework, showers, laundry, etc.

Collapse.

So far, today is more calm. I promised the PT that I would not start checking up on the scheduling office until Monday since they didn’t get her report until noon yesterday. Tonight the kids are both performing in a music festival at school, and we are all looking forward to a quiet weekend. Oh, except for Jimmy and Bill, who are indeed going to play laser tag at a birthday party tomorrow! Bill gets to push the wheelchair so that Jimmy’s hands are free to hold the gun. Boys are weird.

Wednesday, May 19, 2010

Wednesday, May 19

Well, it turns out that better is not all it's cracked up to be. I guess we hung too many hopes on this date, which had seemed so far away for so long. There were two big problems with the Physical Therapy assessment: 1. Jimmy was very wobbly; and 2. There was no vendor there.

The whole reason we had to wait so long for this appointment was that they were supposed to have a vendor present so that we could order whatever equipment the therapist determined that he needed. We originally thought it would be a wheelchair, but more recently thought we were ready for a walker or cane or something.

He had a lot of trouble with the tasks that were being asked of him. Yes, walking is an issue, but who knew he could not stand on his tip toes? Or that his left leg is much weaker than his right?Or that he always looks to see where his feet are when he tries to walk? Or that these things are all really important?

Right off the bat, I felt like an idiot for setting that June 1st goal. He needs a wheelchair, even if he doesn't need it all of the time, he is going to need it some of the time, for who knows how much time. So I'm sitting there trying to adjust my expectations, and then I ask about this mysterious vendor person who was supposedly on the schedule for today, and the PT was like: "Oh, that would have been helpful." When I asked the scheduling office the same question, there was a whole lot of scrambling around and more waiting and it turns out our Pediatrician had called in Jimmy's height and weight to request a wheelchair, but the vendor that our insurance covers replied that they don't make custom wheelchairs.... and so the info just sat in Jimmy's file until I asked about it. Who the hell said we need a custom wheelchair? Standard pediatric would do just fine. Ugh. Anyway, it was good that we hung around to talk with scheduling because before I was done there, the phone calls had progressed enough that we were brought back in to be officially measured, and the PT said that she will write her report and get the order in ASAP.

We've learned that ASAP has an impressive range in these circles, so I also got the number of a place I hope to rent a better chair in the meantime.

Then, to make the whole thing just a tad more annoying, we've only been approved for the evaluation thus far, and although the PT is suggesting two sessions per week, we now need to wait for further approval before we can schedule them. She said that doesn't take long. See comment above about the impressive range of ASAP.

Ugh.

Jimmy is sort of detached through all of this. I don't know if it's not sinking in or if he was just distracted by all of the very interesting things that were going on in the PT room while I talked with the therapist. Or maybe he's just the ultimate zen master and knows better than to fret about these petty issues. He wants to know when he can join a basketball team. I wonder if there are any wheelchair sports leagues in this town?

On we wobble. He's got a cool printed exercise regimen and checklist, he did work hard and it's good to have a plan in motion. Mama's making some phone calls tomorrow. No longer counting on anyone else to follow through with what we need. Duh.

Tomorrow it will be one month.

Tuesday, May 18, 2010

Tuesday, May 18

Okay. I'm not afraid to say it out loud.

Jimmy is getting better!

Better and better and better. When we got home tonight, we left the wheelchair in the car. In the interest of full disclosure, he has fallen on his butt since then, maybe more than once, but still...

Our eyes are on the prize. For him, the prize is riding his bike. For me, it's just... back. Back to April 19th. I think it's going to be a head game from this point on. He's got to learn to trust his body again, to trust his sense of how to hold himself and where he is in space. I've got to remember that he's not fragile, he's the same kid who gave himself a black eye jumping on the mini trampoline on his skateboard on the same day that he headbutted the dog. Was that really last month? That's the story I had to tell over and over during his hospital stay whenever anyone asked if there had been any recent head bumps.

We've got work to do, and here is still a part of me that worries about tomorrow's Physical Therapy assessment and that bigger problems will be revealed. They didn't see him at his worst, they're only going to see him now, and while in my eyes, his condition can only be described as better, how will he look in their eyes?

Tomorrow's update promises to be newsworthy! Keep those good thoughts coming, my friends.

p.s. Happy Birthday, Dad!

Monday, May 17, 2010

Monday, May 17

In an interesting turn of events, Jimmy scored a nearly perfect grade on the math test he took covering the stuff I taught him at home this month! This both delights and frightens me.

He continues to maintain improved balance, it seems that the episodes of wobbles are fewer and farther between. There might just be a light peeking through the of this weird tunnel! I'm still cautiously optimistic at best, wanting to protect all of us from expecting too much too soon.

I'm having to work hard to get him up and working at exercises and movement. I don't know if he's scared or lazy or tired or what, but he prefers to stay put in the wheelchair.

I have to fill out a history form for the Physical Therapy assessment that asks stuff like when he first held his head up and crawled. A better mother would probably remember all that stuff! I'm sure I wrote it all in his baby book; being the first child, his book was fairly well maintained for at least the first year. Maybe I'll drag that thing down from the closet tomorrow. Or maybe I'll just guess. I can't imagine where he gets that tired, lazy inspiration!

I got an email from one of his classmates today inviting him to a laser tag party on Saturday. I'm not sure how to handle that one. Poor guy.

At lunchtime today, I almost told someone to have a good weekend. Not sure how to handle that one, either.

One day at a time, right?

Sunday, May 16, 2010

Weekend, May 15 - 16

It was a busy weekend around here! Jimmy continues to maintain his improved stability. I'm very dubious about claiming that he's on the road to well-ville. I'm afraid to hang our hopes on a speedy recovery because the path of this drama has been anything but predictable. I will say, however, that Jimmy has been getting around the house pretty well using a walker, and last night after he went to bed it was very cool to see that wheelchair abandoned in the living room.

We swam on Saturday, and had the wonderful benefit of a little sister in the pool to entertain and enslave.

I do feel most calm when I'm with Jimmy, but the two of us are verging on the cusp of too much togetherness. We get along famously and I find him endlessly interesting and engaging, but I just don't think farts are all that funny.

Clara went to a birthday party that afternoon and Bill took Jimmy to see Iron Man 2, and I suddenly found myself in the house with a couple of hours and no people! It was lovely. Naturally, I caught up on some work.

Sunday we were up and out early, Clara went to play at Beth's house and Jimmy had a performance with a group from school at the North Park Arts Festival's world music stage. He's part of the Giri Nata, a Balinese Gamelan orchestra.

He's missed a ton of practice, but they were great about having him along for this special performance. Of course, there was no ramp to the stage so we had to manhandle him up the steps and then bring up the wheelchair, but he was comfortable up there and the kids from school are used to seeing him in his ride.

Afterwards, he was invited over to a friend's house. I kept asking if he was sure that he was okay with that - what about the bathroom? What if it was hard to get around? Was he comfortable asking Henry's parents for help? He insisted that he wanted to go, and the parents reassured me that they were there and would keep a close eye on him, so after eschewing the fair food for a lovely brunch at Terra (Jimmy ordered potatoes and bacon), we dropped him off. Eek! And there I was again with no kids! Naturally, I went to Costco.

Then Autumn and her kids came over for dinner, and Jimmy shot hoops (remind me to put murder ball on my queue) and played piano and acted like a doofus and laughed about farts. And all is almost right with the world. Almost.

It was a long day, we're exhausted and ready to curl up on the couch and watch Survivor!

I hope all of you had a great weekend, too.

Friday, May 14, 2010

Friday, May 14

Not much to update today, although we did hear that the rest of the results from the lumbar puncture came back normal. So that was a colossal waste of heartache, but as I said and as I know, you don't know it's clear unless you test it. Jimmy spent the day at the Zoo, he said it was his favorite of the field trip days. Personally, I'll be glad when he's back to spending his days at school where I know I can check up on him 800 times or so in a day.

We visited with friends this evening, good friends with good kids who go with the flow when one of their playmates shows up in a wheelchair.

He was tired when we got home after a long day, he had a meltdown. He gets so mad at himself when he breaks down, but it's a relief to me. He's been so stoic throughout this ordeal. I've cried way more than he has, and I want him to know that it's okay and healthy to let those feelings out. This sucks, we don't have to pretend that it's okay. It's going to be okay, but right now it is anything but. It's good to laugh, but it's okay to cry.

We're looking forward to the weekend, pool time and family time and who knows what to expect any more???? We'll go with the flow, that's how we roll.

Thursday, May 13, 2010

2 fer Thursday - let's get physical

Our Physical Therapy session was humbling and good. We walked in there so pumped about the improvement we have seen in the last day or so. In the first minute, she had Jimmy up and walking with support - he said: "I feel so tall!"


She got him down on the mat and could very quickly zone in on the area where he wobbles, his trunk. We learned some really good exercises we can use at home to encourage his body back into balance.


He worked hard, he pushed himself.


He was a little frustrated, which was tough to see after the high of his goal setting this morning. We're making progress, there's no doubt about that.



But he's still our wobble boy.

Thursday, May 13

I'm almost afraid to say it out loud - or rather, type it out there in the universe... but I think we just might be starting to turn the corner! During those awful days when Jimmy was suffering with the post-lumbar headache, I began to notice that he seemed a bit more stable when I helped him around. I wondered if his brain was distracted by the introduction of pain into these previously docile (albeit wobbly) circumstances. I also wondered if the hours of forced rest were beneficial.

He was pooped after his day in Old Town yesterday (sadly, there were no margaritas for the elementary school students, Tami). We ran a few errands and then came home to rest. We ventured back out for dinner at Islands, and again I noticed that he was requiring a lot less support when getting in and out of the chair. He slept hard last night, and at bedtime I gave him the usual pep talk about visualizing himself standing, walking, running. Last week I had used the visual image of a stairway we hiked in Hawaii for a concrete place where he could imaging himself walking, but he had been unable to see himself doing anything but fall. Last night he said he was still falling, but he could catch himself with the railing.

This morning he got himself up out of bed and down the hall in his wheelchair without assistance. He started telling me about his dream, which took place at karate class, and during the long involved telling, I interrupted to ask: "Were you walking?" He thinks he was.

He wanted to test his legs, so he stood up. And he stayed up! He stepped forward, and fell down.

We just got home from the half day at school, he's chilling before we head to physical therapy at Bill's school. When we got here, we linked arms to walk from the door to the couch, and he was wobbly, but he almost made it the whole way without needing my other arm to catch him. This is exactly where he was when we left the hospital on April 24th. That point also followed a period of complete bedrest. We expected fast and steady progress then, and ended up in a wheelchair on the 28th. So we're staying calm and realistic, but we are also terribly encouraged and ready to ditch that damned chair. We've set a goal of June 1st.

He has a strong, positive outlook and he is determined to get back on his feet, back on his bike, back to his life.

Go, Wobble Boy!

Wednesday, May 12, 2010

Wednesday, May 12

When we last saw our tragic hero, I was feeling optimistic that we were on the tail end of his miserable lumbar headache. I took him to acupuncture in the afternoon, and was happy to note that the pain hadn't flared during the trip over there. It was a super-turbo session, I counted 33 needles!




He felt good afterwards, but I insisted that he remain flat for the rest of the night to increase our odds that he'd be okay this morning. Maybe it was the time, the rest, treatment, or sheer determination, but he woke up good to go! Yay!

I dropped him at school with a plea that I would be called if he reported even the slightest headache, but he made it through the day like a champ.

I actually spent almost a full day at work! Who knew what a treat that could be? I feel badly for everyone who wants to ask what's going on, but isn't quite sure how to do it. Shannon had a good one when she asked: "Is anything new today?" Everyone is very sensitive to the fact that although it's hard to only talk about this, it's just as hard to try to think about anything else.

Tomorrow he will go with his school on a field trip to Chicano Park, then I'll pick him up after the half day and take him to Bill's school to see their physical therapist. It's good to have friends in high places!

It was three weeks ago that we got the wheelchair and I started this blog. Life is still weird.

Today was pretty good. Even better things tomorrow.

Thanks for your support, it's cool to see who is following the blog. I'd love your comments if you are so inclined!

Tuesday, May 11, 2010

Quick Update: Tuesday, May 11

Home again today, we thought maybe he could pull it off because he felt okay when he woke up, but he's so afraid of the headache coming back and the full day of museums just didn't seem conducive to someone who might need to get horizontal at a moment's notice. So I let him sleep in while I took Clara to school, and when I got home I let him sleep in while I got a bunch of work done, and then I let him sleep in some more... a solid 12 hours, and he woke up giggling. The headache is there, pounding and relentless, but he's doing okay. He's hopeful for tomorrow's adventures.

I was able to get him in for acupuncture at 3:30, she's going to work on his spine today so he'll be flat on the table. I know it will be a challenge to get him there, but I think it will help.

I finally spoke with the neurologist, who confirmed that we're doing all we can to help with the headache. I am so glad that we didn't go to the ER. He said that in his 20 years of practice, he's only had to perform a blood patch on 2 patients. He did say that if it persists for longer than 10-14 days (eek!), that would be our next step. He said to give him caffeine - the equivalent of 3 cups o' joe every day, along with 2 quarts of water! And to lay flat except to use the bathroom, which I expect will be necessary about every 5 seconds. The results he has back thus far from the spinal are all normal, which is what we want to hear even though it makes me cringe to think that the test could have been avoided. His recovery will be more swift when we eliminate unfounded worry that would come from wondering if we should have done it.

He's currently watching Rocky 2 while I pound out accounts and order supplies for work. They are amazingly supportive (thanks, team Manchester!), but I sure feel better having had a productive morning. I can't wait to get to the gym tonight!

Better things tomorrow, right?

Monday, May 10, 2010

Monday, May 10

So, today was a rough one. I've avoided updating all day because I really just wanted to be able to downplay how bad this part was once it was all over. The thing is, though, that we're now missing the easy days when Jimmy could sit in a wheelchair! It's like a bad joke. He's had a terrible headache ever since the stupid spinal tap. We keep telling ourselves it will be better in 24 hours... 48 hours... a few days.

He was doing better last night, laughing and lounging in the sun outside, drawing and talking to Grammy on the phone. He was excited for the next day's scheduled field trip and seemed to be on the mend.But this morning, the first I heard from his room was crying. He had woken up and tried to sit and test the headache. It was not good. It was very not good - he thought he would throw up. So once again, we reconfigured the day and once again, I let my coworkers know that I would not be coming in. I called the doctor, left a message as usual. I could hear the weary frustration in my voice. I sensed that we'd be going to the ER, and we just don't like it there.

As the hours passed without a return call, I knew I had to make the decision myself. It's not like I needed or expected the warm reassurance that the neurologist would (not) offer, but I also knew that unless he wanted to do a horrible sounding thing called a blood patch, there was no point in putting Jimmy through the agony of a car trip and waiting room endurance test. He felt okay when he was horizontal, no pillows today, just flat out horizontal. Yet still I spent the day plagued with indecision and haunted by sadness.

This really sucks.

Once again in the afternoon, he started to feel better. He was up in his chair for 15 minutes at a time, and the freedom and relief that we both felt was palpable. He probably overdid it, he's back down for the count and fretting about whether or not he'll be up for museum day tomorrow. We'll just have to see how it goes.

I can't complain about poor communication from the doctors, it's my onus to get him emergency care if and when I feel that he needs it. Feel free to offer your advise, but tread lightly, I'm hanging on by a thread here.

On a lighter note, Bill washed my car so beautifully for Mothers Day, and even cleaned and vacuumed the inside. So what if the battery was left on to drain all night? I've got AAA! When the nice man came to jump start 'er up this morning, I had him bring along a bucket of gas because I was woefully low. Two birds! I never left the house until it was time to go and fetch Clara and take her to karate. I pulled off down the street, alone... which is an emotional place for me right now. But Bill had made me a CD, and queued it up so that this song came on just as I left the driveway. This song was from Mary Beth's righteous end of summer mix last year, it makes me so very happy, despite the fact that tears are streaming down my cheeks. Do yourselves a favor, turn up your speakers:

Share Better Things by Dar Williams

"Better Things", from Dar Williams Out There Live

Here's wishing you the bluest sky
And hoping something better comes tomorrow
Hoping all the verses rhyme,
And the very best of choruses to
Follow all the doubt and sadness
I know that better things are on their way.

Here's hoping that the days ahead
Won't be as bitter as the ones behind you
Be an optimist instead,
And somehow happiness will find you.
Forget what happened yesterday,
I know that better things are on their way.

It's really good to see you rocking out
And having fun,
Living like you've just begun.
Accept your life and what it brings,
I hope tomorrow you find better things.
I know tomorrow you'll find better things.

Here's wishing you the bluest sky
And hoping something better comes tomorrow
Hoping all the verses rhyme,
And the very best of choruses to
Follow all the drudge and sadness
I know that better things are on the way.

I know you've got a lot of good things happening up ahead.
The past is gone, it's all been said.
So here's to what the future brings,
I know tomorrow you'll find better things.
I know tomorrow you'll find better things.

Sunday, May 9, 2010

Sunday, May 9th

We're sticking close to home this weekend due to Jimmy's post-lumbar headache. He's like a poster child for complications these days, but we're still so thankful that we have yet to hear any word that his wobble is caused by anything other than Ataxia, which should resolve within months. He's had this headache since a few hours after the procedure, he feels okay when he lays down, so that's what he is doing. I talked to the nurse on call this morning, as long as it doesn't get worse we do not need to take him in. I'll call the neurologist tomorrow if it hasn't improved, I know there are some things they can do for this, but it might also improve on its own and we'd love to avoid going anywhere near the hospital at the moment. He is supposed to go on some big field trip adventure around the city tomorrow, we'll just have to play it by ear.

We didn't have big plans today anyway, we were just going to eat breakfast at Tower 2 and then walk out on the pier. It's cloudy and cool out, so I went to the gym after opening my loot and then sent Bill and Clara to Costco for one of those sinful broccoli cheese quiches and fresh squeezed OJ. The champagne is chilling. The kids' gifts were great, Bill picked up some of those iron on photo paper things and they made me a tote bag and a t-shirt, along with several wonderful gift cards and treats from the hubby :) Clara gave me the one thing I asked for - she put all of her laundry away! I'm cutting Jimmy some slack on that one, but not for long. The other thing I ask for every Mother's Day is to have my car washed, so I expect that's what will be going on while I sip champagne and toss back bon bons.

I'm sorry to do this to you, but I can't be the only one crying into this Mother's Day card:


Happy Mothers' Day, everyone!

Saturday, May 8, 2010

Still Saturday

Sorry about that, I was having a moment. Total Debbie Downer, geez. I took a long walk with the dumb dog, snuggled with my boy, and made myself a delicious ruby red cocktail. Suddenly, everything seems better! Actually, I've spent the last hour immersed in the National Ataxia Foundation's message boards. So many stories that ring familiar, ye gads. I've got some new stuff to research, action is good. I think that my depressed, down feeling came from realizing that we've now done just about every test and we still have no answers. I can't deal with the watch and wait prognosis, I need to DO something. And you know what I found out? There's an Ataxia Clinic at UCLA. The doctors here are annoying me, maybe it's time to start harassing the folks up north....

Saturday, May 8

It's a beautiful day outside, we had hoped to get to the pool, but Jimmy's not feeling up to it so we're just chilling. He feels okay when he is horizontal, but when he gets up his head hurts. The poor kid just can't catch a break. I read that caffeine helps you heal from a post-lumbar headache, so I got him a java chip frappuccino. He's frustrated and bored, we're tired of this crap. He's tired of laying around and he's tired of needing help. I'm tired of calling doctors and seeing doctors and wondering if we should be seeing different doctors. I'm tired of talking about it and thinking about it and even writing about it. We're just tired.

Friday, May 7, 2010

These all go to Eleven.

How could I not quote the movie that shares a name with the procedure my brave boy had done today? I might have to watch it tonight to pay homage, I'm in just the right mood for awkward laughter.

We're home, it was a long day. We checked in at 10 (after being late getting Clara to school because she informed me on our way out the door about what she was supposed to have done for her mother's day project). The joint was packed. Such sick kids in there, it just tears your heart apart. That feeling fades a little after three hours of waiting for our turn while listening to each one of those poor sick babies cry themselves to sleep and then wake from anesthesia and scream their heads off for the hour they were supposed to lie flat. I kept asking, but no one would agree to sedate me.

He was a trooper, as per the new usual. A child life specialist came and talked to him right when we got there, she let him use a real syringe and tube to start an IV on a cabbage patch doll, and then showed him a photo book of another kid getting a spinal tap. He got his IV, and we chilled out watching game shows and steadfastly not eating or drinking.

When it was Jimmy's turn, they rolled his bed into the procedure room where we met the anesthesiologist, the nurse practitioner who would perform the procedure, and a nurse. We both had the chance to ask questions and see everything, the anesthesiologist asked Jimmy what his allergy was (he wears a red admit bracelet because he's allergic to penicillin), and he answered: "grass and cats." LOL.

He had three injections into his IV, the first two made his eyes all screwy and he was just about to start yakking when the third went in, and about 2 seconds later his eyelids slammed shut and he was out cold. I gave him a kiss on the forehead, told them to take good care of him, and left the room. Then I had what I consider a perfectly natural reaction to the current situation - I started bawling. You'd think that in the frigging oncology/hemo clinic, they'd be desensitized to crying mothers, but they all jumped into action. It was weird. A super annoying woman came in to tell me not to crumble in front of my son, told me her son's big story, and told me a bunch of condescending shit I already know and was not interested in hearing. I just stared at her clumpy make up and responded sarcastically inside my head. By the time she left, my boy was wheeled back in all curled up in the fetal position under a blanket. He was totally cashed out, I just got to stare at him and touch him and breathe again. I feel much better when we're together!

He started to wake up soon after, and was cute and weird and kept asking me the same questions over and over. I gave him a granola bar and some water, and he had to lie flat for an hour. When that time was up, the nurse came and took out his IV, and she thought he felt warm so she took his temperature and it was 100.4, so they made us stay a little longer. I went for sandwiches, the doctor was paged, they monitored him for an hour and it went down to 99, so they sent us home. He on the couch, a little sore. I just gave him an advil and set him up with a heating pad, a gatorade, and the remote control. He's been promised pizza when he gets hungry, and we've got Rocky to watch tonight. Another day, another drama. I talked to the neurologist a little while ago, he wont get some of these results back for a week but he'll call if anything comes up before then. He reassured me that nothing he might find in these tests would warrant any urgent intervention, we continue to coast in this holding pattern, just waiting for things to improve. I'm determined to get him in to Physical Therapy next week, I'll keep y'all posted!

Thursday, May 6

Jimmy had a good day today, he was happy to go to school and enjoyed his acupuncture afterwards. One thing that troubles me is that he says he can not visualize himself without "the wobble", he only sees himself falling down. Is it just too abstract a concept, or is he seeing his future? I'm scared to death of all that we do not know, and I'm on the verge of panic about tomorrow's lumbar puncture. I know he is in the best hands, and I'm very thankful that his doctor wrote the order in such a way that the sedation and hemo/onc clinic was approved by our insurance. Lucky, lucky. I attended an event tonight where I won so many raffle drawings that the other entrants were conjoined in their stink eye. That's a good sign, right? I did not accept the only prize I really wanted; that's good karma, right? I'll offer anything, I'll even give back my yoga mat and exercise videos and false eyelashes and I spy wii game and whatever else is in that swag bag, it's all absurdly unimportant. Just make him okay, okay?

We check in at 10, I'll get to stay with him until he's asleep,we should be home well before dinner time. If you're inclined to pray or hope or wish or dream, don't hold back!!!

Wednesday, May 5, 2010

back to school

Well, after the initial drama of this morning's drop off, Jimmy had a great day at school! I even got to go in to work for a couple of hours, although it was almost more frustrating to be there with so many projects half done and others yet to be started. It's all relative, though. Today it was just good to be there and see everyone. It's hard to answer "how is he?" or "how are you?" with any sense of depth or reality, but being able to say that he was at school felt a whole lot more normal than anything else has in these tumultuous two weeks.

So as I mentioned, Jimmy had asked me to stay at school with him, and I was willing to do so, but at one point he was goofing around with his friend while a very cool artist was addressing his class, and after the third time I told him to knock it off, he informed that I could go ahead and leave. I was happy to oblige, although it was very strange to leave him in someone else's hands, even the wonderful hands at his school. I wish he had a better wheelchair, this one is a clunker and he really needs a pediatric model. No word from the pediatrician today on progress toward getting one.

After school, we went back to the pool for a dip, this time with a kickboard. Then we stopped at the Farmer's Market and sampled everything until it got so crowded on the sidewalks to maneuver around. At 3:00 when I had yet to hear from anyone regarding whether or not the spinal would be tomorrow, I called the neurologist's office again. Once again I left a message with the assistant's voicemail, but this time I directed the message to her rather than to the doctor. About an hour later, I was rewarded with an actual human phone call! Yay! She was surprised that I had not yet heard from the clinic about scheduling, because we were on for tomorrow. Just as we got to the Farmer's Market, a woman from the pediatric oncology unit called. She explained what the doctor had already told me, that he wanted Jimmy's spinal done there because they are experts with the procedure, and she added that they have the best anesthesiologists. Unfortunately, no one had been able to authorize the procedure for tomorrow - not due to an insurance problem, but because their administrative assistant had a family emergency. So we scheduled it for Friday, which is better because Jimmy has a half day tomorrow and gets to spend most of it in his Lego Engineering department, which he has been loathe to miss thus far. I was able to change his Friday acupuncture appointment to tomorrow at 1:30, so it all works out nicely.

Anyone notice how I talk too much to avoid confronting the fact of a lumbar puncture to extract my baby booy's spinal chord fluid? No? Good.

He'll be sedated, no food after midnight tomorrow and we get there at 9:00 for anesthesia at 11. I can stay with him until he falls asleep, then they will (lalalalallalalalalaala I can't heeeaaaar you) and then bring him out to me when he's all done. He'll be right as rain - or at least back to his usual weird self - within a few hours.

And then?

Let's pine for a miraculous, swift recovery, shall we?

back to school

It took a little more than twenty minutes, both of us in tears, and the promise to go straight to GameStop afterwads, but he's in his math class right now. I'm just outside the door on my laptop. Lizbeth, who witnessed the brutal scene near the disabled parking space outside of school just texted me the following: "can I buy you a beer? It's after 9:30" Friends are good :) I told her I had to wait 'til recess.

Tuesday, May 4, 2010

Tuesday, May 4

Hello there, glad you found us. I'll try to update daily. Today I brought Clara to school and checked out the ADA bathroom and other areas where Jimmy's classes will be held for the duration of his ... what... what is this? An illness?A syndrome? An episode? I don't know, but I do know that his classes will be moved downstairs at school until he's out of the wheelchair. His neorologist had suggested that we stay home until the bloodwork he took on Friday came back. It came back, and it was all negative. Remember that Seinfeld when George thought he was dying because someone told him that his test was negative? Negative is good. I had missed this doc's call last night, but finally got to speak with his today while Jimmy made like a pincushion in the acupuncturist's chair.
He said that he was relieved that one test in particular had come back normal, it was the alpha feta protien or something. He said that this ruled out something that he had begun to suspect, something that he referred to as "a miserable disease." It creeps me out to think about what the doctors suspect. especially while Jimmy and the accupuncturist and I sat and talked about Chi and practiced visualizing Jimmy standing solidly, Jimmy walking, Jimmy running.

Now that we've ruled out more creepy stuff, it's time to schedule the spinal tap. We're looking at Thursday. The doctor thinks Jimmy will benefit from some sedation, he was pretty freaked out by the idea of the lumbar puncture. So he's going to try to get us in to the pediatric oncology hemotologists, because these are the peeps who do this procedure the most. Once again, we'll have an opportunity for humility and perspective and gratitude among the kids to whom a spinal tap is fairly routine.

I also spoke to Jimmy's pediatrician today, he's going to try to circumvent the need for that PT assessment before getting a pediatric wheelchair. Bill installed a grib bar in the bathroom that helps very much, and he has a contact at work who is giving us a shower chair tomorrow. We're trying to limit the out of pocket expenses, but of course we're going to make sure that Jimmy has everything he needs to be self sufficient. No 11 year old boy wants his mom holding him up while he pees, for God's sake. And vice verse, just for the record. Not that I don't want him holding me up... you know what I mean.

The big news though, is that we're going to SCHOOL tomorrow! It's been two weeks, and even though it's probably just going to be one day this week, it's a huge step. I don't know how he'll feel after the spinal tap on Thursday, so I consider Friday iffy. He is very apprehensive, but I know he'll feel much better once he gets there and sees all of his goofy friends. I've agreed to stay with him, but if he gets comfortable I'll try and get to work for a couple of hours. Imagine that?

So, that's our update today. Wish us luck in the morning, the hardest part is going to be getting his ass out of bed and out the door. Some things never change!

Thank you all for the comments, for your concern, for your thoughts and prayers. Please keep them coming!

Monday, May 3, 2010

Monday, May 3

The neurologist called at 4:50 to tell me that all of last week's blood tests were normal, and he wanted to talk to me about doing a lumbar puncture. I missed his call, because I was driving and opted not to pick up. Thanks a lot, Oprah. Of course, it's impossible to get a neurologist on the phone unless he calls you, so I had no option but to leave a message with his assistant indicating that we'd love to get this done ASAP so please just tell us when and where. Who ever knew I'd wish a spinal tap upon my baby? I just want to know what we're fighting.

Today was a study in highs and lows. I got up early to get myself to the DMV and procure the disabled placard that would allow us to park in places where it's feasible to pull a wheelchair alongside your car. I updated my facebook page to indicate that I thought I'd be the first one there. When I arrived to find a line literally wrapping around the building, I didn't know whether to laugh or cry. I laughed. I had a book, my husband had taken the day off so the kids were covered. It's 2 hours of my life that I'll never get back, but I was home with a fresh pot of coffee to tackle the day's math lessons by 10:00 am. I had the unique privilege of teaching my boy about pi! That was cool.

Whenever he was able to work independently, I made calls. I can't believe myself when I make these calls. I become a complete dolt, jabbering aimlessly until the poor bastard on the other end of the line takes pity and gets things done for me. I have to say, despite the endless frustration of actually getting the human person, I've had only pleasant and helpful people to deal with at the insurance company and the doctor's office and the therapy offices and the medical supply companies and so on and so on and so on and so on.

I had agreed to both pediatrician and neurologist's offers to prescribe physical therapy, I figured whichever one got us in sooner would win. But despite having both guys in our corner, the appointment we have is for May 19th. Just like in the hospital when everyone was so happy with the results and I just stood there like an imbecile, the person on the phone from physical therapy was so pleased to have secured this appointment with the very best of the best PTs. I stammered out my acceptance, but asked: "So we're on our own until May 19?" She replied with info about parking validation and co-pays. So we're on our own until May 19th. Which I do not accept, but that's for tomorrow's phone calls to work out. He's in a rented adult sized wheelchair that does not fit through our bathroom doorway. He falls down in the bathroom when he tries to go pee by himself. But hey, we'll get to pick the color of our most excellent wheelchair on May 19. But please, please, please God if you're listening... make him better before May 19th.

We met Autumn and Liv for lunch, after narrowly escaping the world's most disturbing and random swarm of murderous bees near the costco gas pumps. End of days, I'm telling you. We survived nicely in location #2 and it was great to have a beer with my girl and her girl, and my boy.

And then our goal was to swim, it was a beautiful day and my boy is a water fish. Oh, the indescribable joy to get him in there (no small task) and see his face open up to a relentless grin as he felt the pressure of the water holding him up, and he realized that he could walk in there. We jogged lap after lap across the shallow end, we laughed and laughed and it was a beautiful day and all was right with the world.

Clara brought home an envelope full of treasures from Jimmy's class. They all made cards, and these were magnificent. They were not your ordinary crayon and construction paper nonsense, they must have worked on these for days - there were felt cut outs, accordion pop-ups, elaborate comics, and heartfelt sentiments. Our hearts nearly burst. But when it came time for bed, Jimmy finally broke down. God, I can't write this through the tears. He just sobbed. My baby boy, he is so broken. When will this end?

Sunday, May 2, 2010

The first two days: worry and doubt

On Tuesday, April 20, I came home from a dinner party and my husband reported that our 11 year old son Jimmy had been complaining of dizziness. According to Bill, Jimmy stood up after American Idol and asked: "Was that an earthquake?" No one else had felt a thing, so he went ahead to bed and although he said the room was spinning, he crashed out and we all expected there to be no lingering story the next day.

Wednesday was Administrative Professionals Day, and I had plans to take my secretary to lunch. When Jimmy got up, I waited to see if he would bring up the incident from the night before. Right away, he complained of dizziness and said that he felt very wobbly. He was rocking a bit from front to back, but able to get around okay and I was unsure about how seriously to take it. He had only been back at school for ONE DAY after a 3 week spring break, and I suspected that he just wanted to crawl back into bed. I told him about my plans for the day, and with a tilted head I looked him in the eye and asked: "Do you think I should cancel my appointments and take you to the doctor?" He answered: "I think so."

So I called the pediatrician's office and lo and behold, our very own doctor was available for a 9:30 appointment. We took Clara to school and I told the principal that I was going to run Jimmy over to the doctor and would probably drop him off before lunch. I called my secretary and told her that I was pretty sure that the doctor would find an ear infection, and I'd be there in time for our lunch date.

Well, his ears looked fine. There was no obvious sign of any illness or cause for the symptoms that Jimmy was describing. The doctor hyptothesized that an inner ear infection might be causing some vertigo, and he prescribed Meclizine and sent us home for the day with the ominous warning: "if it doesn't get better in a couple of days, we'll need to talk."

On Thursday, it was clear that Jimmy could not go to school. He continued to wobble whenever he stood or tried to walk. I took him to a local theater where his school was having a field trip, and he needed more and more help getting around as the morning progressed. After the play, I took us to the wrong level in the parking garage, and at one point I realized that we were far from the car and that my son could not walk with me to find it. I parked him against a railing and went to fetch the car, then drove back down to get him. He was unable to walk from the railing to the car. I started to get scared.

He deteriorated over the course of that day. It was a Thursday, which means Survivor night in our household. We cooked dinner and then watched it together, but he needed a lot of help to get to bed afterwards. Once the kids were in bed, I fixed myself a drink and sat down to relax for the night. Jimmy got up to use the bathroom, and he fell. I helped him back to bed, and then poured my drink down the sink drain. I had a terrible feeling in my gut, I contemplated taking him to the ER right then, but he was tired and so was I, and he seemed okay to sleep. I decided to call the pediatrician first thing in the morning.

On Friday morning, I called the pediatrician's office around 7:30 to verify that they opened at 8:00 am. I thought I'd listen to the recorded info and then call back after getting the kids up. One of the options that the recording gave was to speak to a medical advise line, so I selected that number and was connected to a triage nurse. It was difficult to describe his symptoms without freaking out. It's one thing to see your child wobble and wonder if something weird was going on, but quite another to tell a health care professional that he was unable to stand without assistance, and when she asked: "Can he walk?" I had to say no. She instructed me that he needed to be seen within the hour. By this time, the office was almost open and our Doctor was scheduled to be in that day, so I thought I could take Clara to school and then head over. The triage nurse paged the doctor on call, whom I spoke with a couple of times to corroborate this plan. Just as I headed back to my room to change clothes before leaving the house, the doctor called again and said that our pediatrician had reviewed the case and wanted us to head to the Emergency Room at Children's Hospital.

to be continued... I want to get all this down before we start to forget. Or... we could forget