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.

Thursday, June 17

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

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

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.

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.

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

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.

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

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

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!

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.