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.
Showing posts with label bad days. Show all posts
Showing posts with label bad days. Show all posts
Tuesday, June 8, 2010
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?
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?
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?
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.
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.
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.
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.
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.
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.
Saturday, May 8, 2010
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.
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