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?
Tuesday, June 15, 2010
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!
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
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.
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.
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?
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.
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.
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.
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