(insert your favorite simile here. My favorite at the moment is 'a centipede in a toe-counting contest')
Today is the last day of our fiscal year at work, so I'm rushing around doing last-minute reports and data cleanup. Don't expect to hear much today...but please, starting thinking good thoughts about J.J.'s driving evaluation tomorrow morning!
Tuesday, March 31, 2009
Monday, March 30, 2009
J.J.'s Speech...
is dramatically improved!
Last night after I posted I spent quite some time talking to J.J. and I thought his speech sounded better but chalked it up to a day spent lazily at home without the demands of speech therapy taxing his system. But I just picked him up from a full day of therapy and his speech is still soooo much better than it had been.
I think the reduced swelling in his brain has finally hit Broca's area.
I am so encouraged. His writing/typing are still pretty bad, otherwise I think he could almost go back to work now!
God definitely knows when to throw me a bone :)
And with that, I'm off to the dentist...
Last night after I posted I spent quite some time talking to J.J. and I thought his speech sounded better but chalked it up to a day spent lazily at home without the demands of speech therapy taxing his system. But I just picked him up from a full day of therapy and his speech is still soooo much better than it had been.
I think the reduced swelling in his brain has finally hit Broca's area.
I am so encouraged. His writing/typing are still pretty bad, otherwise I think he could almost go back to work now!
God definitely knows when to throw me a bone :)
And with that, I'm off to the dentist...
New Week
And another new day has come. I had a good cry after I posted last night and am feeling much better this morning. I have no other options than to take a deep breath and power on through this, do I?
Anyway, we're getting ready to leave home in a few to drop the kids off at day care and then take J.J. to have some labs drawn (he was supposed to have this done Saturday morning but we couldn't leave pukey kid long enough to do it). After this, I'll drop J.J. off at home and will head into work. I should be there by 9:00, which means if I skip lunch I'll get a full day in. J.J. has his last session of physical therapy today, followed by speech therapy (he'll be doing speech for another three weeks or so). I have a dental appointment this evening (still working on getting my root canal totally done; this one is just to take the impressions to have my permanent crown made. My gums were bleeding too much on Saturday to do this), but there are no kid activities tonight. Maybe I'll finally get to bed early. I wouldn't hold my breath on this one.
Oh, and to answer what everyone's thinking after my last post: I am still on my Zoloft. I have been seeing a counselor. I have found an online message board for stroke survivors and their caregivers, and we will be starting to attend a support group in a couple of weeks. I'm really okay, just overwhelmed. Not to mention that I'm not one to suffer in silence, unfortunately!
Time to move ahead through another day. Make it a great one!
Anyway, we're getting ready to leave home in a few to drop the kids off at day care and then take J.J. to have some labs drawn (he was supposed to have this done Saturday morning but we couldn't leave pukey kid long enough to do it). After this, I'll drop J.J. off at home and will head into work. I should be there by 9:00, which means if I skip lunch I'll get a full day in. J.J. has his last session of physical therapy today, followed by speech therapy (he'll be doing speech for another three weeks or so). I have a dental appointment this evening (still working on getting my root canal totally done; this one is just to take the impressions to have my permanent crown made. My gums were bleeding too much on Saturday to do this), but there are no kid activities tonight. Maybe I'll finally get to bed early. I wouldn't hold my breath on this one.
Oh, and to answer what everyone's thinking after my last post: I am still on my Zoloft. I have been seeing a counselor. I have found an online message board for stroke survivors and their caregivers, and we will be starting to attend a support group in a couple of weeks. I'm really okay, just overwhelmed. Not to mention that I'm not one to suffer in silence, unfortunately!
Time to move ahead through another day. Make it a great one!
Sunday, March 29, 2009
Stages of Grief
I knew it would happen sooner or later; I finally missed a day. When I was a young girl, I always stopped keeping my diaries after I missed the first daily entry (my perfectionist tendencies started early, obviously). I'll try not to employ the same strategy with this blog.
I've been having kind of a rough weekend. It's amazing to me that every time I think I'm doing really well and that I'm vaguely in control of the situation, a new wave of grief slaps me upside the head and I go spiralling off into self-pity. Make no mistake, I'm grieving just as surely as I would have if I had lost J.J. After all, in some ways, I have.
It's interesting how many stages of grief I can embody simultaneously. Today I've caught myself in bargaining a couple of different times, once praying that J.J.'s speech would return even if his reading did not completely return. The other time, I prayed that J.J.'s reading would come back fully even if his speech did not. I'm obviously pretty ambivalent on which scenario would be preferable. The one thing I'm sure of is that a physical disability would have been easier to deal with, no matter how impractical it would have been from a tactical standpoint to retrofit the house or whatnot. Obviously this isn't an option, but it doesn't stop me from wondering about it. I've also gone through anger in a big way this afternoon, both with the doctor who failed to diagnose J.J.'s heart failure less than three weeks before his stroke and who set him a follow up appointment SIX MONTHS in the future from when he first went in for a consult, a healthy man who suddenly was running diastolic blood pressures over 120 (needless to say, I've since cancelled this appointment) and with J.J. for not going to the doctor the week before his stroke when he was feeling unwell, despite my insistence. I know there's no way to know if anything would have changed due to either of these factors, but that doesn't stop me from being angrier than I've ever been in my life. Depression settles around me like a cloak several times a day, usually in the evening and during the rare moments when I'm alone. It doesn't last for more than a minute or two because I don't have time to completely succumb to it. I'm afraid if I do fall into that quicksand that I will never touch bottom to propel myself above the surface.
The one stage I outwardly portray most of the time, acceptance, is for the most part a sham. It's numbness, a feeling of being emotionally blunted, that carries me through most days. One of these days I'm going to have to start feeling again, and then I'm going to fall apart. I can't afford that luxury. There's too much to do.
I have tears streaming down my face as I type this. J.J.'s watching TV just a few feet away and I have no idea how I'm going to make it past him to the bathroom without him noticing that I've been crying. I don't want him to see the toll this is taking on me; he has enough to deal with. But it's really difficult to be this cut off from your chief source of emotional support.
I didn't sign on for this. I'm 30 years old. I never thought I'd be in this position at this age. I feel like I've aged at least twenty years in the last six weeks.
I'm so over this stroke thing.
For anyone who has read this far, bless you. Don't worry about me; I'll be better in the morning. But do pay attention to this--don't mess around with your health. Don't ignore the way you feel and assume that because you're young nothing bad will happen. If you won't take care of yourself simply out of love for yourself, do it for those who love you. Because no one should have to go through this.
I've been having kind of a rough weekend. It's amazing to me that every time I think I'm doing really well and that I'm vaguely in control of the situation, a new wave of grief slaps me upside the head and I go spiralling off into self-pity. Make no mistake, I'm grieving just as surely as I would have if I had lost J.J. After all, in some ways, I have.
It's interesting how many stages of grief I can embody simultaneously. Today I've caught myself in bargaining a couple of different times, once praying that J.J.'s speech would return even if his reading did not completely return. The other time, I prayed that J.J.'s reading would come back fully even if his speech did not. I'm obviously pretty ambivalent on which scenario would be preferable. The one thing I'm sure of is that a physical disability would have been easier to deal with, no matter how impractical it would have been from a tactical standpoint to retrofit the house or whatnot. Obviously this isn't an option, but it doesn't stop me from wondering about it. I've also gone through anger in a big way this afternoon, both with the doctor who failed to diagnose J.J.'s heart failure less than three weeks before his stroke and who set him a follow up appointment SIX MONTHS in the future from when he first went in for a consult, a healthy man who suddenly was running diastolic blood pressures over 120 (needless to say, I've since cancelled this appointment) and with J.J. for not going to the doctor the week before his stroke when he was feeling unwell, despite my insistence. I know there's no way to know if anything would have changed due to either of these factors, but that doesn't stop me from being angrier than I've ever been in my life. Depression settles around me like a cloak several times a day, usually in the evening and during the rare moments when I'm alone. It doesn't last for more than a minute or two because I don't have time to completely succumb to it. I'm afraid if I do fall into that quicksand that I will never touch bottom to propel myself above the surface.
The one stage I outwardly portray most of the time, acceptance, is for the most part a sham. It's numbness, a feeling of being emotionally blunted, that carries me through most days. One of these days I'm going to have to start feeling again, and then I'm going to fall apart. I can't afford that luxury. There's too much to do.
I have tears streaming down my face as I type this. J.J.'s watching TV just a few feet away and I have no idea how I'm going to make it past him to the bathroom without him noticing that I've been crying. I don't want him to see the toll this is taking on me; he has enough to deal with. But it's really difficult to be this cut off from your chief source of emotional support.
I didn't sign on for this. I'm 30 years old. I never thought I'd be in this position at this age. I feel like I've aged at least twenty years in the last six weeks.
I'm so over this stroke thing.
For anyone who has read this far, bless you. Don't worry about me; I'll be better in the morning. But do pay attention to this--don't mess around with your health. Don't ignore the way you feel and assume that because you're young nothing bad will happen. If you won't take care of yourself simply out of love for yourself, do it for those who love you. Because no one should have to go through this.
Friday, March 27, 2009
Since I can't say anything nice about today...
I won't say anything at all. Oh, nothing big is wrong, just a kid who is sick with the stomach flu while the other kid is at the grandparents' (they were both supposed to go and give me a break, darn it!), a husband who can't walk due his arthritis in his feet flaring up due to some of the work they had him doing in PT today, a mountain of laundry, six million things to do this weekend and a throbbing sciatic nerve since I've been overdoing it lately. Just normal-ish complaints. But I'm starting to be a little overwhelmed by living in survival mode all the time. I need a break soon, or I'm going to break!
Thursday, March 26, 2009
Answer to Prayer
Around 11:00 this morning, J.J. called me at work. This is unusual these days, which is ironic since pre-stroke I used to complain to my coworkers about how often J.J. called (never to talk for long, but he called at least two or three times a day. I used to call him Incessant Calling Boy). Anyway, his lead in--"All of a sudden, I can read". I'm waiting until we get the kids to bed to test him out on this, but he says his reading is a lot more effortless today. Not totally back where it was, but much better. He's spent all afternoon reading, and he's exhausted. But happy.
Just this morning I was reading in a book that it often takes six weeks or so for the swelling that accompanies left MCA strokes to go down. It's amazing to me that at five weeks and four days, J.J. would have this sudden improvement. It's like having a timer on an oven or something! Who'd have thought J.J. was typical?
Oh, and in addition, he walked six miles and did 45 minutes of aerobics. He's wanting to lose another 60 lbs. before he goes back to work. Hey, who am I to tell him he can't? After all, he's lost almost 90 lbs. already!
I'll update much more on this tomorrow, but for tonight, I'm going to enjoy hearing a bedtime story!
Just this morning I was reading in a book that it often takes six weeks or so for the swelling that accompanies left MCA strokes to go down. It's amazing to me that at five weeks and four days, J.J. would have this sudden improvement. It's like having a timer on an oven or something! Who'd have thought J.J. was typical?
Oh, and in addition, he walked six miles and did 45 minutes of aerobics. He's wanting to lose another 60 lbs. before he goes back to work. Hey, who am I to tell him he can't? After all, he's lost almost 90 lbs. already!
I'll update much more on this tomorrow, but for tonight, I'm going to enjoy hearing a bedtime story!
Wednesday, March 25, 2009
BEAUTIFUL Day!
I am in such a good mood this morning I can barely stand myself. My jaw is sore all the way up the side of my face, my gums on the top left side are sore, I can't really bite into anything--and this is a gigantic improvement! I was able to get the root canal yesterday afternoon (all afternoon long--it took four hours!) and I slept last night for eight hours. It's like a whole new world this morning.
Anyway, on to more important matters...
As I mentioned yesterday, J.J.'s speech had been choppier over the last couple of days, which I think was due to lack of sleep. This morning he seemed significantly better. He's still frustrated about his reading; last night he read a couple of pages aloud to me, and he sounds like a first grader just learning to read. We had been told to expect this, though, and he is getting better (he says that once he's read a word once he tends to be able to read it much better in subsequent tries). He is trying to read primarily work related stuff and higher level vocabulary to gain back as much function as possible as quickly as possible. He'll get there.
I've been noticing over the last week or so that J.J. is truly the happiest I think I've ever seen him. I think this "near death experience" (in quotes because he wasn't ever in true danger) has made us both realize how good we have it. It's been a wake up call in health related terms, as you can tell by J.J.'s tremendous weight loss, but also it has forced us both to live in the moment, since it really hit home that none of us has any idea how many more moments we have. Anyway, even though J.J. is frustrated by the stroke's aftermath, he radiates this calm satisfaction almost all the time. Last night while we were drifting off to sleep (and please remember, this conversation was influenced by my being on Vicodin!) we talked about the concept that maybe we need to consider that God didn't just help us get through this experience, but that just maybe, we can consider that He gave us the stroke as a gift to help us remember what's important. I think this sort of mentality is a big part of what makes J.J. a stroke survivor and not a stroke victim, if you know what I mean.
Alright, I must start working, especially since I've not been able to do as much lately as I'd have liked due to the tooth. I'll try to do a more thorough update this evening; J.J. has speech therapy today so I'll report on the results.
Anyway, on to more important matters...
As I mentioned yesterday, J.J.'s speech had been choppier over the last couple of days, which I think was due to lack of sleep. This morning he seemed significantly better. He's still frustrated about his reading; last night he read a couple of pages aloud to me, and he sounds like a first grader just learning to read. We had been told to expect this, though, and he is getting better (he says that once he's read a word once he tends to be able to read it much better in subsequent tries). He is trying to read primarily work related stuff and higher level vocabulary to gain back as much function as possible as quickly as possible. He'll get there.
I've been noticing over the last week or so that J.J. is truly the happiest I think I've ever seen him. I think this "near death experience" (in quotes because he wasn't ever in true danger) has made us both realize how good we have it. It's been a wake up call in health related terms, as you can tell by J.J.'s tremendous weight loss, but also it has forced us both to live in the moment, since it really hit home that none of us has any idea how many more moments we have. Anyway, even though J.J. is frustrated by the stroke's aftermath, he radiates this calm satisfaction almost all the time. Last night while we were drifting off to sleep (and please remember, this conversation was influenced by my being on Vicodin!) we talked about the concept that maybe we need to consider that God didn't just help us get through this experience, but that just maybe, we can consider that He gave us the stroke as a gift to help us remember what's important. I think this sort of mentality is a big part of what makes J.J. a stroke survivor and not a stroke victim, if you know what I mean.
Alright, I must start working, especially since I've not been able to do as much lately as I'd have liked due to the tooth. I'll try to do a more thorough update this evening; J.J. has speech therapy today so I'll report on the results.
Tuesday, March 24, 2009
This blog isn't about me...
But I have to get all whiny for a moment about how crappy I feel. I have slept for a grand total of 45 minutes in the last two days due to the pain from my tooth. Although it's not a constant pain, it does throb frequently enough to make it impossible to fall asleep. I'm at work, but I'm not making any promises about whether or not I'll last through the day. I definitely need to see my 9:00 client, then I'll figure out what I'm doing from there. If I don't feel better pronto, I'm tempted to go hang out in my dentist's office until he gives me a root canal. Assuming, of course, that I'll be done in time to go get the kids tonight and to get Eli to drum lessons and 4-H. I am so looking forward to J.J. being able to drive again.
In case you didn't notice below, J.J. is scheduled for his rehabilitative driving program next Wednesday. Hopefully after this we'll be able to get him back behind the wheel. We will so be going out this weekend to practice.
Since I haven't been sleeping, J.J. hasn't been sleeping well either. I'm noticing that this has a dramatic impact on his speech--since he is tired, his speech is way choppier.
Hopefully things will get back to normal soon.
In case you didn't notice below, J.J. is scheduled for his rehabilitative driving program next Wednesday. Hopefully after this we'll be able to get him back behind the wheel. We will so be going out this weekend to practice.
Since I haven't been sleeping, J.J. hasn't been sleeping well either. I'm noticing that this has a dramatic impact on his speech--since he is tired, his speech is way choppier.
Hopefully things will get back to normal soon.
Monday, March 23, 2009
Driving Evaluation
We got the call we've been waiting for today. J.J. is scheduled for 9:00 a.m. next Wednesday, April 1. Note the date; it had better not be a joke!
More later. Must go get kids from school.
More later. Must go get kids from school.
Sunday, March 22, 2009
Park
We spent some time today at the park, enjoying the spring weather. Here's a couple of pics of the kids to enjoy--and don't miss the before and after pics of J.J. below!
J.J. Today--Over 80 lbs. lighter than before the stroke!
I didn't really get any decent full length shots, but just take a look at the change in his face!
Before Pic--J.J. in October
I thought I had kept a picture I took of him shoveling snow in January, but I can't find it so this is the most recent pre-stroke picture I have. He probably was 20 lbs. or so heavier than this when he had the stroke.
Saturday, March 21, 2009
Tooth Trouble
So after a horrible, terrible night that I hope to never have to repeat, I went to my dentist this morning. I have an abcessed tooth, actually the one I had crowned the day after J.J.'s stroke. This is what was causing all of my ear pain and the pain I had in my jaw. Apparently the big problem was that my crown was not seated correctly and was causing my bite to hit on the crowned tooth before it hit anywhere else, which was making this injured tooth bear the brunt of each bite I've taken over the last month (not to mention all the tooth grinding I know I'm doing in my sleep). The dentist compared it to walking on a broken ankle. He ground the crown down and I've had instant relief! I'm still to finish out my antibiotic prescription and I should stay on Vicodin for the next day or so (I had actually loosened some of the ligaments around the tooth, so they need time to heal) but today has been much more enjoyable than yesterday was.
My ear is all clogged up still, and this morning it struck me--between my ear and J.J.'s right eye blindness and aphasia, the two of us make up "see no evil, hear no evil, speak no evil". J.J. likes this almost as much as my comment that he had given up speaking for Lent, which is to say he gave it a not-at-all-subtle eye roll.
When I got home from the dentist, I found that the first bill for J.J.'s stroke-related medical care had arrived in today's mail. So Rehab Physicians of Indiana, you can rest assured, your check for $12.80 is in the mail.
We spent the whole afternoon up at our friends Nova and Mike's house, letting the kids play outside and just visiting. I think this is the first true social outing J.J.'s been on since he's been home, and it went well. He's still the same guy and looks the same (although thinner!) and I think this reassures people. He's still got a long road ahead of him but he's already come so far.
I found a support group specifically for people with aphasia that we will start attending in a couple of weeks. I think we'll both enjoy mixing with some people who understand how we feel right now.
That's about all the news to come out of the last couple of days. I'm hoping that we don't have to deal with me being sick on top of everything else again for a while--it really gums up the works!
My ear is all clogged up still, and this morning it struck me--between my ear and J.J.'s right eye blindness and aphasia, the two of us make up "see no evil, hear no evil, speak no evil". J.J. likes this almost as much as my comment that he had given up speaking for Lent, which is to say he gave it a not-at-all-subtle eye roll.
When I got home from the dentist, I found that the first bill for J.J.'s stroke-related medical care had arrived in today's mail. So Rehab Physicians of Indiana, you can rest assured, your check for $12.80 is in the mail.
We spent the whole afternoon up at our friends Nova and Mike's house, letting the kids play outside and just visiting. I think this is the first true social outing J.J.'s been on since he's been home, and it went well. He's still the same guy and looks the same (although thinner!) and I think this reassures people. He's still got a long road ahead of him but he's already come so far.
I found a support group specifically for people with aphasia that we will start attending in a couple of weeks. I think we'll both enjoy mixing with some people who understand how we feel right now.
That's about all the news to come out of the last couple of days. I'm hoping that we don't have to deal with me being sick on top of everything else again for a while--it really gums up the works!
Friday, March 20, 2009
Change of Plans
We won't be going to Ohio this weekend after all. I have an ear infection, which is some of the worst pain I have ever been through, by the way. Travel was just slightly beyond my abilities.
I'll update more later tonight or tomorrow morning, just didn't want anyone to be expecting us...
I'll update more later tonight or tomorrow morning, just didn't want anyone to be expecting us...
Thursday, March 19, 2009
The cardiologist missed his calling...
I know I do a lot of complaining about medical personnel. It's not that I am not grateful to them for saving my husband's life, because I am. I feel that he has received very good care from people who are very knowledgeable in their field.
My complaint has more to do with the extreme lack of compassion some of these people (mostly the physicians) show. The cardiologist is a prime example. I told J.J. that I feel this guy has missed his calling. He REALLY should have been a proctologist instead, because he certainly must know a lot about a certain portion of anatomy, given his ability to imitate it. This was not a mature or charitable comment, but I think you get the drift. I'm frustrated.
Again J.J.'s blood pressure is spot on (118/82 today). His EKG strip looked great. His weight is much better. He's obviously been a compliant patient. But all this doctor (who was 90 minutes late for the appointment, by the way) could do was talk down to us about our choice to change J.J.'s medication (which, as you may recall, was supported by both the primary neurologist J.J. saw in rehab as well as his primary neurologist from the hospital, the one I call Dr. Acula). He spent 20 minutes telling us why J.J. really should be on the other drug and how we are "throwing our money away" with the current medication regimen he's on. Although he made sure at the end of the appointment to say that he wasn't changing J.J.'s medication back to the other drug (leading to a very puzzled look from me). He wouldn't acknowledge the 10 percent gain J.J. had in his ejection fraction (EF) in a week (the second test was done at rehab, so it somehow doesn't count in his opinion) and will not agree to double check J.J.'s EF again until August because the medication "needs time to work". He also informed us that he was pleasantly surprised to see J.J. functioning so well since he really thought he wouldn't have a very positive outcome when he was in the hospital.
Considering that this guy is in practice with the doctor who apparently missed that J.J. was in cardiac failure three weeks before the stroke, I am incredibly unimpressed with this cardiology group. I can put up with Dr. Acula (who suddenly doesn't seem so bad after all), but I think we may be shopping for a new cardiologist who is NOT part of this practice. Besides, I really want a second opinion on whether or not J.J.'s current medication is the best course of treatment, taking into account the side effects he had on the first med. I think quality of life has to figure into the equation at some point.
So basically today's visit was a complete waste of time. And I had to miss three hours of work to make it happen, including our monthly management meeting.
I have come to the conclusion that caregiving full-time while working full-time stinks. A lot. I'm buying a ticket for Saturday's lottery drawing. Keep your fingers crossed for me! :)
Oh, by the way, you may not hear much from me over the next couple of days. Eli is going to be participating in a Tae Kwon Do tournament in Columbus, OH on Saturday, so we'll be going over after work/school/therapy tomorrow. So if you're part of our Columbus contingent, brace yourself for incoming!
My complaint has more to do with the extreme lack of compassion some of these people (mostly the physicians) show. The cardiologist is a prime example. I told J.J. that I feel this guy has missed his calling. He REALLY should have been a proctologist instead, because he certainly must know a lot about a certain portion of anatomy, given his ability to imitate it. This was not a mature or charitable comment, but I think you get the drift. I'm frustrated.
Again J.J.'s blood pressure is spot on (118/82 today). His EKG strip looked great. His weight is much better. He's obviously been a compliant patient. But all this doctor (who was 90 minutes late for the appointment, by the way) could do was talk down to us about our choice to change J.J.'s medication (which, as you may recall, was supported by both the primary neurologist J.J. saw in rehab as well as his primary neurologist from the hospital, the one I call Dr. Acula). He spent 20 minutes telling us why J.J. really should be on the other drug and how we are "throwing our money away" with the current medication regimen he's on. Although he made sure at the end of the appointment to say that he wasn't changing J.J.'s medication back to the other drug (leading to a very puzzled look from me). He wouldn't acknowledge the 10 percent gain J.J. had in his ejection fraction (EF) in a week (the second test was done at rehab, so it somehow doesn't count in his opinion) and will not agree to double check J.J.'s EF again until August because the medication "needs time to work". He also informed us that he was pleasantly surprised to see J.J. functioning so well since he really thought he wouldn't have a very positive outcome when he was in the hospital.
Considering that this guy is in practice with the doctor who apparently missed that J.J. was in cardiac failure three weeks before the stroke, I am incredibly unimpressed with this cardiology group. I can put up with Dr. Acula (who suddenly doesn't seem so bad after all), but I think we may be shopping for a new cardiologist who is NOT part of this practice. Besides, I really want a second opinion on whether or not J.J.'s current medication is the best course of treatment, taking into account the side effects he had on the first med. I think quality of life has to figure into the equation at some point.
So basically today's visit was a complete waste of time. And I had to miss three hours of work to make it happen, including our monthly management meeting.
I have come to the conclusion that caregiving full-time while working full-time stinks. A lot. I'm buying a ticket for Saturday's lottery drawing. Keep your fingers crossed for me! :)
Oh, by the way, you may not hear much from me over the next couple of days. Eli is going to be participating in a Tae Kwon Do tournament in Columbus, OH on Saturday, so we'll be going over after work/school/therapy tomorrow. So if you're part of our Columbus contingent, brace yourself for incoming!
Wednesday, March 18, 2009
Stroke Education
I really need to be working. I am chronically behind at work. Some of it is due to the amount of time I've been out due to the stroke and its aftermath. Much more of it is due to the seasonal nature of our business. But anyway, there's no way I'm going to be able to concentrate on my job until after the kids are in bed anyway, so I thought I'd share with you a little of the knowledge I've accumulated in the last month.
J.J.'s stroke occurred in the middle cerebral arterty (MCA) in the left hemisphere of his brain. The MCA is essentially a branch of the carotid and is the main blood supply for the frontal lobe. Left MCA strokes are the most common type of stroke, with incidence of about 80 per 100,000 people per year.
Although we still don't know for sure, the theory is that J.J.'s stroke was an ischemic stroke. This means that an obstruction (a blood clot, embolus or similar) travelled to the MCA and created a blockage. This type of stroke has about a 70-85% survival rate during the acute phase, which is defined as the first 30 days. Ischemic strokes are the way to go in this case; the other classification of stroke is hemorrhagic (where the blood vessel leaks blood into the brain), which has only about a 20% survival rate in the acute phase.
The risk of MCA stroke increases with age. Most MCA strokes occur in individuals in their 70s and 80s. Of the strokes that occur in younger patients (defined as those under age 46), most are hemorrhagic. About 20% of strokes in patients under the age of 45 are defined as having unknown origin, which is what I assume J.J.'s will end up classified as. So we do have company, although it's not a typical case.
Okay, so now that we have that out of the way, let's look at the area where J.J.'s stroke occured. In most (about 95%) right handed individuals, the brain's speech and language functions are housed primarily in the left hemisphere. The main speech centers are Broca's area (a small area lying between the frontal and parietal lobes) and Wernicke's area (which lies further back in the parietal lobe, also taking up some real estate in the temporal and occipital lobes). Broca's area is responsible for expressive language, the ability to formulate speech. This is the aphasia I refer to (although in J.J.'s case, it would technically be known as dysphasia. The prefix a- indicates the absence of something, which is not true for J.J. He can speak, it's just not as he normally would. The prefix dys- indicates trouble performing the task). It also plays a role in reading comprehension and written expression. From J.J.'s deficits, we know that his stroke dramatically impacted Broca's area. Wernicke's area is responsible for language comprehension. Since J.J. has very little trouble understanding what is said to him, it is likely that this area of his brain was not impacted by the stroke.
Okay, so what are other classic impacts of a left MCA stroke?
-Apraxia, which is the inability to perform previously learned movements without physical damage to the structures responsible. The term apraxia is often qualified to denote the part of the body impacted. You may recall that J.J. originally was diagnosed with apraxia of speech, which meant that he had trouble getting his lips and tongue to move in ways to create speech. Over 90% of patients with Broca's aphasia have this problem at some point. This issue seems to be almost completely resolved.
-Extinction and/or neglect, where objects placed on one side of the patient's visual field are ignored. In left MCA strokes, the neglect should occur on the right side. J.J. has been diagnosed as having some slight right neglect, but I challenge this diagnosis given the fact that the man IS BLIND IN HIS RIGHT EYE. I don't notice any significant changes from his pre-stroke function in this area.
-Right side physical weakness. Specifically in left MCA strokes, the hand and arm are often impacted more severely than the right leg and foot, which are partially spared. J.J. has had the right side weakness, although it seems to be mostly resolved. In his case, though, his deficits were actually worst in his lower body. Just J.J. bucking conformity. Again.
-Difficulty swallowing. This actually never was a problem for J.J., but the possibility of it being a problem is what kept him NPO for a couple of days.
-Numbness or sensation changes. Again, this never was a problem in J.J.'s case.
-Diminished attention span. This actually is a slight problem for J.J., although he's always been slightly to the ADHD end of the spectrum. It's getting much better as time goes on, though. I actually think this, rather than the damage to Broca's area, is responsible for some of his reading comprehension problems.
-Difficulty creating new memories. Haven't noticed any gaps in J.J.'s memory, other than perhaps the night of the stroke.
-Motor planning problems, especially with walking. Again, not a problem for J.J.
-Peripheral vision loss. This is why we saw the specialized optometrist. J.J. did not lose any peripheral vision and actually has a better visual field than most people with two functioning eyes.
-In some rare cases, patients experience a syndrome called facial agnosia, which leads to difficulty identifying familiar objects, particularly faces. Thankfully, not J.J.
So there you have it. By looking at the symptoms J.J. does and does not have, we can narrow down the area of damage in his brain to a very small sliver of the posterior left frontal and the anterior left parietal lobes. And indeed, this is what the CT scan confirmed.
The good news is that as a 33 year old man, J.J.'s brain has a large amount of plasticity, which is the ability to shunt functionality away from the damaged areas and into other areas of the brain. This is what's happening every day with him and why he's making such progress. It's not a linear process, though, which is frustrating to him. And sometimes the deficits make very little sense; for instance, J.J. has a big problem with the word "pineapple". Can't say it on his own, doesn't respond to cuing, takes several tries to repeat it after me when I say it. So the neural connection to wherever he's stored pineapple in his brain appears to be still under construction. Luckily, I doubt this will keep him from leading a full and productive life.
Now I must go do some INHP work. But I hope this has shed some light on what's going on in J.J.'s head. I actually think it's fascinating, although I kinda wish I wasn't in the middle of a case study...
J.J.'s stroke occurred in the middle cerebral arterty (MCA) in the left hemisphere of his brain. The MCA is essentially a branch of the carotid and is the main blood supply for the frontal lobe. Left MCA strokes are the most common type of stroke, with incidence of about 80 per 100,000 people per year.
Although we still don't know for sure, the theory is that J.J.'s stroke was an ischemic stroke. This means that an obstruction (a blood clot, embolus or similar) travelled to the MCA and created a blockage. This type of stroke has about a 70-85% survival rate during the acute phase, which is defined as the first 30 days. Ischemic strokes are the way to go in this case; the other classification of stroke is hemorrhagic (where the blood vessel leaks blood into the brain), which has only about a 20% survival rate in the acute phase.
The risk of MCA stroke increases with age. Most MCA strokes occur in individuals in their 70s and 80s. Of the strokes that occur in younger patients (defined as those under age 46), most are hemorrhagic. About 20% of strokes in patients under the age of 45 are defined as having unknown origin, which is what I assume J.J.'s will end up classified as. So we do have company, although it's not a typical case.
Okay, so now that we have that out of the way, let's look at the area where J.J.'s stroke occured. In most (about 95%) right handed individuals, the brain's speech and language functions are housed primarily in the left hemisphere. The main speech centers are Broca's area (a small area lying between the frontal and parietal lobes) and Wernicke's area (which lies further back in the parietal lobe, also taking up some real estate in the temporal and occipital lobes). Broca's area is responsible for expressive language, the ability to formulate speech. This is the aphasia I refer to (although in J.J.'s case, it would technically be known as dysphasia. The prefix a- indicates the absence of something, which is not true for J.J. He can speak, it's just not as he normally would. The prefix dys- indicates trouble performing the task). It also plays a role in reading comprehension and written expression. From J.J.'s deficits, we know that his stroke dramatically impacted Broca's area. Wernicke's area is responsible for language comprehension. Since J.J. has very little trouble understanding what is said to him, it is likely that this area of his brain was not impacted by the stroke.
Okay, so what are other classic impacts of a left MCA stroke?
-Apraxia, which is the inability to perform previously learned movements without physical damage to the structures responsible. The term apraxia is often qualified to denote the part of the body impacted. You may recall that J.J. originally was diagnosed with apraxia of speech, which meant that he had trouble getting his lips and tongue to move in ways to create speech. Over 90% of patients with Broca's aphasia have this problem at some point. This issue seems to be almost completely resolved.
-Extinction and/or neglect, where objects placed on one side of the patient's visual field are ignored. In left MCA strokes, the neglect should occur on the right side. J.J. has been diagnosed as having some slight right neglect, but I challenge this diagnosis given the fact that the man IS BLIND IN HIS RIGHT EYE. I don't notice any significant changes from his pre-stroke function in this area.
-Right side physical weakness. Specifically in left MCA strokes, the hand and arm are often impacted more severely than the right leg and foot, which are partially spared. J.J. has had the right side weakness, although it seems to be mostly resolved. In his case, though, his deficits were actually worst in his lower body. Just J.J. bucking conformity. Again.
-Difficulty swallowing. This actually never was a problem for J.J., but the possibility of it being a problem is what kept him NPO for a couple of days.
-Numbness or sensation changes. Again, this never was a problem in J.J.'s case.
-Diminished attention span. This actually is a slight problem for J.J., although he's always been slightly to the ADHD end of the spectrum. It's getting much better as time goes on, though. I actually think this, rather than the damage to Broca's area, is responsible for some of his reading comprehension problems.
-Difficulty creating new memories. Haven't noticed any gaps in J.J.'s memory, other than perhaps the night of the stroke.
-Motor planning problems, especially with walking. Again, not a problem for J.J.
-Peripheral vision loss. This is why we saw the specialized optometrist. J.J. did not lose any peripheral vision and actually has a better visual field than most people with two functioning eyes.
-In some rare cases, patients experience a syndrome called facial agnosia, which leads to difficulty identifying familiar objects, particularly faces. Thankfully, not J.J.
So there you have it. By looking at the symptoms J.J. does and does not have, we can narrow down the area of damage in his brain to a very small sliver of the posterior left frontal and the anterior left parietal lobes. And indeed, this is what the CT scan confirmed.
The good news is that as a 33 year old man, J.J.'s brain has a large amount of plasticity, which is the ability to shunt functionality away from the damaged areas and into other areas of the brain. This is what's happening every day with him and why he's making such progress. It's not a linear process, though, which is frustrating to him. And sometimes the deficits make very little sense; for instance, J.J. has a big problem with the word "pineapple". Can't say it on his own, doesn't respond to cuing, takes several tries to repeat it after me when I say it. So the neural connection to wherever he's stored pineapple in his brain appears to be still under construction. Luckily, I doubt this will keep him from leading a full and productive life.
Now I must go do some INHP work. But I hope this has shed some light on what's going on in J.J.'s head. I actually think it's fascinating, although I kinda wish I wasn't in the middle of a case study...
Letter from a wounded brain
I found this on a stroke support board I recently joined and really thought it was interesting. For those of us who will be around J.J. as he transitions back into the world, maybe it can give us some perspective...
Hello,
I'm glad to see that you are awake! This is your brain talking. I had to find some way to communicate with you. I feel like I barely survived WWIII and am still not quite all in one piece.
That's why I need you. I need you to take care of me.
As time passes and you and I feel better and better, people, even doctors, will tell you that we are fine, "it's time to get on with life." That sounds good to me and probably even better to you. But before you go rushing back out into that big wide world, I need you to listen to me, really listen. Don't shut me out. Don't tune me out.
When I'm getting into trouble I'll need your help more than I ever have before.I know that you want to believe that we are going to be the same. I'll do my best to make that happen. The problem is that too many people in our situation get impatient and try to rush the healing process; or when their brains can't fully recover they deny it and, instead of adapting, they force their brains to function in ways they are no longer able too. Some people even push their brains until they seize, and worse... I'm scared. I'm afraid that you will do that to me. If you don't accept me I am lost. We both will be lost.
How can I tell you how much I need you now? I need you to accept me as I am today... not for what I used to be, or what I might be in the future. So many people are so busy looking at what their brains used to do, as if past accomplishments were a magical yardstick to measure present success or failures, that they fail to see how far their brains have come. It's as if there is shame, or guilt, in being injured. Silly, huh?
Please don't be embarrassed or feel guilt, or shame, because of me. We are okay. We have made it this far. If you work with me we can make it even further. I can't say how far. I won't make any false promises. I can only promise you this, that I will do my best.
What I need you to do is this: because neither of us knows how badly I've been hurt (things are still a little foggy for me), or how much I will recover, or how quickly, please go s-l-o-w-l-y when you start back trying to resume your life. If I give you a headache, or make you sick to your stomach, or make you unusually irritable, or confused, or disoriented, or afraid, or make you feel that you are overdoing it, I'm trying to get your attention in the only way I can. Stop and listen to me.
I get exhausted easily since being hurt, and cannot succeed when overworked. I want to succeed as much as you do. I want to be as well as I can be, but I need to do it at a different pace than I could before I got hurt. Help me to help us by paying attention and heeding the messages I send to you.
I will do my part to do my very best to get us back on our feet. I am a little worried though that if I am not exactly the same... you will reject me and may even want to kill us. Other people have wanted to kill their brains, and some people have succeeded. I don't want to die, and I don't want you to die.
I want us to live, and breathe and be, even if being is not the same as it was. Different may be better. It may be harder too, but I don't want you to give up. Don't give up on me. Don't give up on yourself. Our time here isn't through yet. There are things that I want to do and I want to try, even if trying has to be done in a different way. It isn't easy. I have to work very hard, much harder, and I know that you do too. I see people scoff, and misunderstand. I don't care. What I do care about is that you understand how hard I am working and how much I want to be as good as I can be, but I need you to take good care of us, as well as you can do that.
Don't be ashamed of me. We are alive. We are still here. I want the chance to try to show you what we are made of. I want to show you the things that are really important in life. We have been given another chance to be better, to learn what is really important. When it is finally time for our final exit I would like to look back and feel good about what we made of us and out of everything that made up our life, including this injury. I cannot do it without you. I cannot do it if you hate me for the way being injured has affected me and our life together. Please try not to be bitter in grief. That would crush me.
Please don't reject me. There is little I can do without you, without your determination to not give up. Take good care of us and of yourself. I need you very much, especially now.
Love,your wounded brain
©1996 Stephanie St. Claire
Hello,
I'm glad to see that you are awake! This is your brain talking. I had to find some way to communicate with you. I feel like I barely survived WWIII and am still not quite all in one piece.
That's why I need you. I need you to take care of me.
As time passes and you and I feel better and better, people, even doctors, will tell you that we are fine, "it's time to get on with life." That sounds good to me and probably even better to you. But before you go rushing back out into that big wide world, I need you to listen to me, really listen. Don't shut me out. Don't tune me out.
When I'm getting into trouble I'll need your help more than I ever have before.I know that you want to believe that we are going to be the same. I'll do my best to make that happen. The problem is that too many people in our situation get impatient and try to rush the healing process; or when their brains can't fully recover they deny it and, instead of adapting, they force their brains to function in ways they are no longer able too. Some people even push their brains until they seize, and worse... I'm scared. I'm afraid that you will do that to me. If you don't accept me I am lost. We both will be lost.
How can I tell you how much I need you now? I need you to accept me as I am today... not for what I used to be, or what I might be in the future. So many people are so busy looking at what their brains used to do, as if past accomplishments were a magical yardstick to measure present success or failures, that they fail to see how far their brains have come. It's as if there is shame, or guilt, in being injured. Silly, huh?
Please don't be embarrassed or feel guilt, or shame, because of me. We are okay. We have made it this far. If you work with me we can make it even further. I can't say how far. I won't make any false promises. I can only promise you this, that I will do my best.
What I need you to do is this: because neither of us knows how badly I've been hurt (things are still a little foggy for me), or how much I will recover, or how quickly, please go s-l-o-w-l-y when you start back trying to resume your life. If I give you a headache, or make you sick to your stomach, or make you unusually irritable, or confused, or disoriented, or afraid, or make you feel that you are overdoing it, I'm trying to get your attention in the only way I can. Stop and listen to me.
I get exhausted easily since being hurt, and cannot succeed when overworked. I want to succeed as much as you do. I want to be as well as I can be, but I need to do it at a different pace than I could before I got hurt. Help me to help us by paying attention and heeding the messages I send to you.
I will do my part to do my very best to get us back on our feet. I am a little worried though that if I am not exactly the same... you will reject me and may even want to kill us. Other people have wanted to kill their brains, and some people have succeeded. I don't want to die, and I don't want you to die.
I want us to live, and breathe and be, even if being is not the same as it was. Different may be better. It may be harder too, but I don't want you to give up. Don't give up on me. Don't give up on yourself. Our time here isn't through yet. There are things that I want to do and I want to try, even if trying has to be done in a different way. It isn't easy. I have to work very hard, much harder, and I know that you do too. I see people scoff, and misunderstand. I don't care. What I do care about is that you understand how hard I am working and how much I want to be as good as I can be, but I need you to take good care of us, as well as you can do that.
Don't be ashamed of me. We are alive. We are still here. I want the chance to try to show you what we are made of. I want to show you the things that are really important in life. We have been given another chance to be better, to learn what is really important. When it is finally time for our final exit I would like to look back and feel good about what we made of us and out of everything that made up our life, including this injury. I cannot do it without you. I cannot do it if you hate me for the way being injured has affected me and our life together. Please try not to be bitter in grief. That would crush me.
Please don't reject me. There is little I can do without you, without your determination to not give up. Take good care of us and of yourself. I need you very much, especially now.
Love,your wounded brain
©1996 Stephanie St. Claire
Geranium Update
We have officially met the challenge! Eli was asked to sell at least 125 plants and I just phoned in our first order for (drum roll please) 153 PLANTS!!! Thanks for all of your support!
Oh, and just in case you meant to order but haven't yet--we will have extras! Just let me know!
Oh, and just in case you meant to order but haven't yet--we will have extras! Just let me know!
Stroke Coordinator Appointment
I'm sorry for not updating last night. I got absorbed in some INHP work I was doing and didn't get the time to update the blog.
Anyway, the appointment was awesome. First of all, J.J.'s blood pressure is very well controlled now. It was 126/79 yesterday. We also got numbers from his cholesterol panel that was done shortly before he was released from RHI. I'm a little confused by these, so I will be calling his doctor this morning. Anyway, his total cholesterol was 129 (they want this to be below 200). His LDL was 76 (they want this below 100), his HDL was 29 (this one is very low; they want this to be at least 60. So he's going to be taking some Omega-3 Fatty Acids for this) and his triglycerides were 119 (they want this to be below 150). What confuses me is that this panel was done BEFORE he was put on Zocor to keep his cholesterol under control! What about this panel says that he needs a cholesterol medication? Like I said, I must investigate. His panel is to be repeated on 3/27/09 so we'll see what the changes have been.
The stroke coordinator (who is a nurse practitioner, by the way) was really impressed with J.J.'s neurological exam. She couldn't find any difference in his muscle group strength from one side to the other. He was able to answer all of her questions (including some math problems) and had no trouble drawing a clock for her (all showing that his cognitive abilities have not been significantly impacted). She gave the referral to the rehabilitative driving program with no hesitation (FINALLY this gets accomplished! One more thing I can check off my to do list!) and wants to see him back in two months. After this, she thinks he'll be released from all monitoring at RHI. And he seems to be on track to be back at work sometime in early May.
The next appointment worth noting is tomorrow, when J.J. will be seeing his cardiologist. I'm hoping they'll do the doppler in office to check his ejection fraction so we don't have to go to the lab again. Either way, look for an update tomorrow evening on this.
Anyway, the appointment was awesome. First of all, J.J.'s blood pressure is very well controlled now. It was 126/79 yesterday. We also got numbers from his cholesterol panel that was done shortly before he was released from RHI. I'm a little confused by these, so I will be calling his doctor this morning. Anyway, his total cholesterol was 129 (they want this to be below 200). His LDL was 76 (they want this below 100), his HDL was 29 (this one is very low; they want this to be at least 60. So he's going to be taking some Omega-3 Fatty Acids for this) and his triglycerides were 119 (they want this to be below 150). What confuses me is that this panel was done BEFORE he was put on Zocor to keep his cholesterol under control! What about this panel says that he needs a cholesterol medication? Like I said, I must investigate. His panel is to be repeated on 3/27/09 so we'll see what the changes have been.
The stroke coordinator (who is a nurse practitioner, by the way) was really impressed with J.J.'s neurological exam. She couldn't find any difference in his muscle group strength from one side to the other. He was able to answer all of her questions (including some math problems) and had no trouble drawing a clock for her (all showing that his cognitive abilities have not been significantly impacted). She gave the referral to the rehabilitative driving program with no hesitation (FINALLY this gets accomplished! One more thing I can check off my to do list!) and wants to see him back in two months. After this, she thinks he'll be released from all monitoring at RHI. And he seems to be on track to be back at work sometime in early May.
The next appointment worth noting is tomorrow, when J.J. will be seeing his cardiologist. I'm hoping they'll do the doppler in office to check his ejection fraction so we don't have to go to the lab again. Either way, look for an update tomorrow evening on this.
Zing!
J.J. has the misfortune of having a wife who absorbs everything his therapists tell her and thus he is never safe from having to do therapy exercises. Last night just before we went to bed I was quizzing him on colors. Shortly after he had correctly answered what color our sheets are (red) and what his favorite color is (blue) I asked him what color my hair is.
A little background is in order here--my natural hair color is a very dark brown. The back naturally comes in a little darker than the front. To complicate matters, I have both highlights (kind of a carmelly-colored dark blonde) and lowlights (a very deep auburn red). But overall, you still get the picture...my hair is brown. This was the answer I was seeking.
But J.J., smarty pants that he is, looked at me with a devilish glint in his eyes and said, "Which part?"
We both cracked up over that one.
A little background is in order here--my natural hair color is a very dark brown. The back naturally comes in a little darker than the front. To complicate matters, I have both highlights (kind of a carmelly-colored dark blonde) and lowlights (a very deep auburn red). But overall, you still get the picture...my hair is brown. This was the answer I was seeking.
But J.J., smarty pants that he is, looked at me with a devilish glint in his eyes and said, "Which part?"
We both cracked up over that one.
Tuesday, March 17, 2009
Lesson learned
A little before 9:00 this morning, the guy who has been laying the tile in our bathroom called to say he wouldn't be coming out today but would be working tomorrow morning instead. After I hung up, I tried to call J.J. to let him know. His phone went to voicemail each time I called over the next TWO HOURS. I even sent him an email asking him to call me. By 10:45, I was convinced that something terrible had happened to him and decided to run home to check. Just as I was pulling out of the parking lot, he finally called--his phone battery had died.
Lesson learned: charge cell phone each night. Because it wouldn't be good if we both had strokes, and I'm fairly sure my blood pressure still hasn't returned to normal after this.
Lesson learned: charge cell phone each night. Because it wouldn't be good if we both had strokes, and I'm fairly sure my blood pressure still hasn't returned to normal after this.
Monday, March 16, 2009
Swimming Lesson Time!
What DID I ever do without a smart phone? It's so awesome to be able to update my blog no matter where I am.
Only real news from today which you are not aware of is that J.J. got a cutoff date for therapy today. Our insurance will only cover his sessions through April 20. For now, anyway. I think you all know me well enough by now to know that if he gets to this point and still needs more therapy, I will find a way to make it happen.
Tomorrow J.J. will be meeting with the Stroke Coordinator at RHI. We're hoping to leave this meeting with a referral to the rehabilitative driving program. He also has speech therapy again tomorrow (Monday, Tuesday and Friday this week). His therapist is working a lot on written sentence completions now. He has homework every night.
Speaking of homework, Eli is doing fractions in math. Do you know how many years it's been since I did fractions? It's always nice to encounter the feeling that third grade math may be beyond your abilities.
Leah's second to last swimming lesson is drawing to a close, so I'd better sign off. If I don't update before then, I hope to have an excellent update after tomorrow's appointment!
Only real news from today which you are not aware of is that J.J. got a cutoff date for therapy today. Our insurance will only cover his sessions through April 20. For now, anyway. I think you all know me well enough by now to know that if he gets to this point and still needs more therapy, I will find a way to make it happen.
Tomorrow J.J. will be meeting with the Stroke Coordinator at RHI. We're hoping to leave this meeting with a referral to the rehabilitative driving program. He also has speech therapy again tomorrow (Monday, Tuesday and Friday this week). His therapist is working a lot on written sentence completions now. He has homework every night.
Speaking of homework, Eli is doing fractions in math. Do you know how many years it's been since I did fractions? It's always nice to encounter the feeling that third grade math may be beyond your abilities.
Leah's second to last swimming lesson is drawing to a close, so I'd better sign off. If I don't update before then, I hope to have an excellent update after tomorrow's appointment!
Last night's dream
Was the first one in which J.J. was as he is now (i.e., having trouble speaking). Every other dream I've had since the stroke has featured the 'old' J.J. I guess it's a sign that my subconscious finally has things all figured out, but it's still a little sad.
One month later
One month ago, I had just left INHP to travel back to the hospital, where my husband was confined to ICU room 6. His smile was crooked, the right side of his face was slack. His right eye didn't track with the other eye. He could wiggle his toes on his right foot but couldn't lift his heel off the bed. His right arm didn't move reliably and his fine motor control was almost non-existent. He communicated primarily through nodding/shaking his head and verbal responses were limited to only a few words (yes, no, hello, okay, thanks, I love you). He was allowed nothing to eat or drink due to the fear that he would aspirate anything he took orally. He was having trouble breathing and was receiving oxygen through a nasal canula.
Today is a completely different story. J.J. is home; cooking, playing games with his children, leaving his socks in the middle of the floor for me to pick up. He is walking without an assistive device of any kind and is not limited in the distance he can walk (they didn't even issue us a temporary disabled parking sticker). His fine motor control has progressed to the point that his signature really doesn't look any different than it did before. His beautiful smile is back. His laugh lines are back. The sparkle in his eyes is back. His speech is vastly improved. And he's anxious to get back to driving in the next couple of weeks and back to work within the next couple of months (he's shooting for no later than 5/15/09, three months after the stroke).
What a difference a month makes.
God is good.
Today is a completely different story. J.J. is home; cooking, playing games with his children, leaving his socks in the middle of the floor for me to pick up. He is walking without an assistive device of any kind and is not limited in the distance he can walk (they didn't even issue us a temporary disabled parking sticker). His fine motor control has progressed to the point that his signature really doesn't look any different than it did before. His beautiful smile is back. His laugh lines are back. The sparkle in his eyes is back. His speech is vastly improved. And he's anxious to get back to driving in the next couple of weeks and back to work within the next couple of months (he's shooting for no later than 5/15/09, three months after the stroke).
What a difference a month makes.
God is good.
Sunday, March 15, 2009
Frustration, thy name is aphasia...
J.J.'s speech is still getting better, but not by the leaps and bounds it was doing at first. He's still getting hung up on nouns (although, strangely, proper nouns are not nearly the problem they were at first. I was putting him through his paces yesterday and asked him who the members of his department at work are. He answered Brian, Jay, James, Carrie and Kevin, which is correct as far as I know). Worst are the names of objects he doesn't use every day. Profanity does not seem to be lagging in his speech--he's been know to toss a four letter word in when he gets hung up in a sentence! He is careful not to do this in front of the kids, though.
Conversing with the kids is the biggest problem J.J.'s encountering right now. He will pause to find a word and the kids will chime in to try to finish his sentence, which just completely derails him. Take this as lesson number one when dealing with someone with aphasia--be patient! Most of the time if I wait, J.J. can either figure out the word he's looking for or talk his way around it. If he's terminally stuck, after a minute or two I ask him, "Can I take a guess?" He usually says yes, then I see if I can supply the word he was looking for. If I find it (which I have about a 95% accuracy rate!) then I cue him to get him to say it. For instance, if he's looking for the word newspaper, after I've confirmed that this is the word he wants, I will say, "Newspaper. Nnnnnnn," which is his cue to try the word for himself. Since J.J.'s receptive language center was not affected by his stroke, he is extremely responsive to cues.
I cannot begin to understand how frustrating it is for J.J. to know what he wants to say and not be able to say it. He's likened it to that uncomfortable feeling you get when someone asks you a question you KNOW you know the answer to (i.e., who wrote the Star Spangled Banner?) and you can't quite find the answer but instead get the "it's on the tip of my tongue" feeling. Think of how annoying that feeling is, where the harder you try to find the answer, the farther away it gets. Then at 2:00 a.m. you sit up in bed and exclaim, "Francis Scott Key!" J.J. will sometimes do this as well, blurting out a word that has to do with a conversation we had a few hours earlier. But hey, this shows his memory is intact, at least!
We've got a low key day planned. I'm listing some stuff on Craigslist (everything that's not bolted down in my house right now is running the risk of being listed--just because I'm on an extended cleaning spree!), then I want to get a little bit of touch-up cleaning done. J.J. is wanting to go bowling later; his speech therapist has suggested this as a great therapy exercise for J.J. since it involves both the physical things we are trying to work on (like balance!) as well as involving a lot of higher level cognitive functions, like spatial planning, sequencing and problem solving. We didn't go to church this morning (this daylight savings time thing is sooo hard to get used to!) but I'd like to make it to evening service. And somewhere in there, I want to get some INHP stuff done as well.
Hope your weekend has been as relaxed and productive as ours!
Conversing with the kids is the biggest problem J.J.'s encountering right now. He will pause to find a word and the kids will chime in to try to finish his sentence, which just completely derails him. Take this as lesson number one when dealing with someone with aphasia--be patient! Most of the time if I wait, J.J. can either figure out the word he's looking for or talk his way around it. If he's terminally stuck, after a minute or two I ask him, "Can I take a guess?" He usually says yes, then I see if I can supply the word he was looking for. If I find it (which I have about a 95% accuracy rate!) then I cue him to get him to say it. For instance, if he's looking for the word newspaper, after I've confirmed that this is the word he wants, I will say, "Newspaper. Nnnnnnn," which is his cue to try the word for himself. Since J.J.'s receptive language center was not affected by his stroke, he is extremely responsive to cues.
I cannot begin to understand how frustrating it is for J.J. to know what he wants to say and not be able to say it. He's likened it to that uncomfortable feeling you get when someone asks you a question you KNOW you know the answer to (i.e., who wrote the Star Spangled Banner?) and you can't quite find the answer but instead get the "it's on the tip of my tongue" feeling. Think of how annoying that feeling is, where the harder you try to find the answer, the farther away it gets. Then at 2:00 a.m. you sit up in bed and exclaim, "Francis Scott Key!" J.J. will sometimes do this as well, blurting out a word that has to do with a conversation we had a few hours earlier. But hey, this shows his memory is intact, at least!
We've got a low key day planned. I'm listing some stuff on Craigslist (everything that's not bolted down in my house right now is running the risk of being listed--just because I'm on an extended cleaning spree!), then I want to get a little bit of touch-up cleaning done. J.J. is wanting to go bowling later; his speech therapist has suggested this as a great therapy exercise for J.J. since it involves both the physical things we are trying to work on (like balance!) as well as involving a lot of higher level cognitive functions, like spatial planning, sequencing and problem solving. We didn't go to church this morning (this daylight savings time thing is sooo hard to get used to!) but I'd like to make it to evening service. And somewhere in there, I want to get some INHP stuff done as well.
Hope your weekend has been as relaxed and productive as ours!
Saturday, March 14, 2009
Overheard at the dinner table...
We did our grocery shopping for the week late today and didn't get home until almost 8:30. We just finished a very late dinner of salad, sandwiches and chips.
Leah has recently fallen in love with salad and will chew through three or four bowls at one sitting if allowed. I joked that she was a salad monster, which has led her to begin growling as she "attacks" her salad. It's so amusing to hear her say, "I'm going to eat you up!" in her best monster voice as she's munching.
Eli doesn't find it quite so amusing. He keeps rolling his eyes at his sister's "crazy" behavior. Tonight after she had done this several times he laid down his fork, pointed at his sister, and declared, "I know what's made you so weird. It's the ECONOMY!!!"
I suppose everyone is blaming it for everything else they don't like in this world, why not this too?
Leah has recently fallen in love with salad and will chew through three or four bowls at one sitting if allowed. I joked that she was a salad monster, which has led her to begin growling as she "attacks" her salad. It's so amusing to hear her say, "I'm going to eat you up!" in her best monster voice as she's munching.
Eli doesn't find it quite so amusing. He keeps rolling his eyes at his sister's "crazy" behavior. Tonight after she had done this several times he laid down his fork, pointed at his sister, and declared, "I know what's made you so weird. It's the ECONOMY!!!"
I suppose everyone is blaming it for everything else they don't like in this world, why not this too?
Friday, March 13, 2009
Bag
I'm on a roll with the posts today, huh? I think it's that I finally have some time and can actually think about some things I want to document. I'm almost pathological in my need to remember what each day has felt like since the stroke. Especially since I went to the bookstore tonight to try to find some books about stroke recovery--I found very little, and what I did find was written for seniors. Somewhere out there, someday, another young wife will find herself in my shoes, and I'd like for our blog to be a resource for her.
Anyway, I walked out of the bathroom a few minutes ago and was confronted by the bag that's sitting at the foot of our bed. I can list the contents of this blue cloth tote bag, a giveaway at some training I attended, without looking: a pair of J.J.'s shoes, a pair of black socks, some undies, a pair of sweats, a t-shirt, a toothbrush (new, still in the package, courtesy of my dentist's office), a travel-sized tube of toothpaste, a stick of deodorant and a book.
I know because this is the bag I packed on February 15 after the ambulance left with J.J. while I was waiting for my mom to arrive. I packed these things thinking of what J.J. would want if they ended up keeping him overnight for observation. And I figured I could finish off the book while I waited for him to be released from the ER, since I really assumed he'd be home with me before sunrise.
The bag has made it in from the trunk of the car. It's made it upstairs and into our room. But I can't seem to unpack it. Somehow I think I've come to identify it as the last thing I did during our life "before", and putting these things away is almost analogous to packing away the naive person I used to be. For someone whose waking hours are now consumed with stroke-related thoughts, I'm pretty sure I hadn't spent more than an hour (cumulative time) in my life thinking about strokes before that night. I never expected to be a stroke wife. I never expected to be asked whether I wanted to administer a drug to my husband that 5 times out of 100 killed the patients who received it. I never expected to visit my 33 year old husband in the ICU. And it's hard to admit that I am forever different than who I was when I packed that bag.
One of my goals for this weekend is to at least move the bag into the closet. If I can't stand to unpack it yet, well, that's okay. I can give myself permission to be that weak.
Anyway, I walked out of the bathroom a few minutes ago and was confronted by the bag that's sitting at the foot of our bed. I can list the contents of this blue cloth tote bag, a giveaway at some training I attended, without looking: a pair of J.J.'s shoes, a pair of black socks, some undies, a pair of sweats, a t-shirt, a toothbrush (new, still in the package, courtesy of my dentist's office), a travel-sized tube of toothpaste, a stick of deodorant and a book.
I know because this is the bag I packed on February 15 after the ambulance left with J.J. while I was waiting for my mom to arrive. I packed these things thinking of what J.J. would want if they ended up keeping him overnight for observation. And I figured I could finish off the book while I waited for him to be released from the ER, since I really assumed he'd be home with me before sunrise.
The bag has made it in from the trunk of the car. It's made it upstairs and into our room. But I can't seem to unpack it. Somehow I think I've come to identify it as the last thing I did during our life "before", and putting these things away is almost analogous to packing away the naive person I used to be. For someone whose waking hours are now consumed with stroke-related thoughts, I'm pretty sure I hadn't spent more than an hour (cumulative time) in my life thinking about strokes before that night. I never expected to be a stroke wife. I never expected to be asked whether I wanted to administer a drug to my husband that 5 times out of 100 killed the patients who received it. I never expected to visit my 33 year old husband in the ICU. And it's hard to admit that I am forever different than who I was when I packed that bag.
One of my goals for this weekend is to at least move the bag into the closet. If I can't stand to unpack it yet, well, that's okay. I can give myself permission to be that weak.
Guess Who's Reading?
J.J. is sprawled out in bed behind me...READING! This is what my life usually feels like, folks!
We're going to get back to normal. Or at least something like it.
We're going to get back to normal. Or at least something like it.
I love this man...
This one. I don't mean the one I fell in love with, the one I kissed at the altar on our wedding day, the one whose arms were the first to hold our son, the one I've woken up next to every morning for so many years I'm completely broken of the habit of trying to sleep in the middle of the bed. Although I love him as well.
I mean the man who lost most of his ability to produce language but who never forgot how to tell me he loved me. The man who has started eating salad regularly to make sure he never has this problem again. The man who spends hours a day trying to read even though it's so hard for him it's no longer enjoyable. The man who does whatever he can to make my day easier in whatever way he can. The man who still cuddles his children every night before bed. The man who attempts to look over our son's homework even though he most often has to hand it over to me to check. The man who never stops trying, never stops believing, and never gives up.
The J.J. I knew is gone forever, since even if he makes a full recovery, this experience will have changed him. But it's changed me too. And this new Erin is ready to love the new J.J. completely. Whoever he is, I know some things won't change. That gentle soul is still the soul of my best friend.
Just an epiphany I had to share...:)
I mean the man who lost most of his ability to produce language but who never forgot how to tell me he loved me. The man who has started eating salad regularly to make sure he never has this problem again. The man who spends hours a day trying to read even though it's so hard for him it's no longer enjoyable. The man who does whatever he can to make my day easier in whatever way he can. The man who still cuddles his children every night before bed. The man who attempts to look over our son's homework even though he most often has to hand it over to me to check. The man who never stops trying, never stops believing, and never gives up.
The J.J. I knew is gone forever, since even if he makes a full recovery, this experience will have changed him. But it's changed me too. And this new Erin is ready to love the new J.J. completely. Whoever he is, I know some things won't change. That gentle soul is still the soul of my best friend.
Just an epiphany I had to share...:)
TGIF
I'm sitting in my allergist's office for the mandatory 30 minute wait to make sure I don't have a reaction to my allergy shot. Usually this feels like wasted time, but this morning I've already done some banking and made my grocery list. Apparently having my husband have a stroke makes me more productive.
So, first order of business today-the knee. The final verdict is that it just appears to be a case of knee strain caused by that hip flexor not being fully back up to par. We're going to slap a knee brace on him for a while until his leg lifts yield the desired results.
J.J. did have speech therapy again yesterday. She really worked him hard; his speech was really choppy by the time he got home. But he's doing very well and has even been able to start reading books again-it just takes a lot longer for him to read now, like 10 minutes per page. He's frustrated by this but I know he'll keep improving.
I have my first counseling appointment today. My doctor suggested that it might be a good idea for me to talk to someone who doesn't have an emotional involvement in the situation. We'll see how this goes.
So, first order of business today-the knee. The final verdict is that it just appears to be a case of knee strain caused by that hip flexor not being fully back up to par. We're going to slap a knee brace on him for a while until his leg lifts yield the desired results.
J.J. did have speech therapy again yesterday. She really worked him hard; his speech was really choppy by the time he got home. But he's doing very well and has even been able to start reading books again-it just takes a lot longer for him to read now, like 10 minutes per page. He's frustrated by this but I know he'll keep improving.
I have my first counseling appointment today. My doctor suggested that it might be a good idea for me to talk to someone who doesn't have an emotional involvement in the situation. We'll see how this goes.
Thursday, March 12, 2009
Shameless Plug--Geranimus
I'm interrupting your stroke coverage for the special news bulletin that Eli is selling geraniums to support his 4-H club, Lucky Green Clovers. The 4 inch pots are $1.25 each and are available in red, pink, white, salmon and violet (which I am intrigued by--I've never seen a violet geranium!) The plants will be delivered around April 30 and payment is not due until delivery. If you're local and planning some spring landscaping, please keep us in mind!
If you are an INHP employee, you can place your order on the sheet in the break room. If you're an Ivy Tech employee, please see my mother, Cathy Alsman, for more info. If you don't fall into either of the previous categories, feel free to send me an email (erinrobertson at sbcglobal dot net--just remember to use the proper punctuation!) and I'll get your order submitted. Or leave a comment on this entry; either will work!
Thanks for your support of Wayne Township 4-H!
If you are an INHP employee, you can place your order on the sheet in the break room. If you're an Ivy Tech employee, please see my mother, Cathy Alsman, for more info. If you don't fall into either of the previous categories, feel free to send me an email (erinrobertson at sbcglobal dot net--just remember to use the proper punctuation!) and I'll get your order submitted. Or leave a comment on this entry; either will work!
Thanks for your support of Wayne Township 4-H!
Tonight
It just struck me that today will be the first day since J.J.'s stroke that I will put in a full day of work in the office AND not have any kid-activities to attend this evening. So when I get home at 6:00ish, I'm off duty for the rest of the night! What a relief!
(I suppose I'm not really off duty because I'll still need to do some cleaning and laundry, but considering that I'm usually trying to squeeze these in while my work computer is booting up or while some kid is getting dressed for lessons of one type or another, this will seem like a vacation!)
We haven't received the results of J.J.'s knee scans yet, but should have some info later today. You'll know as soon as I know.
J.J.'s still making improvements, particularly in his speech and reading. He spends hours each day working on both. I've been doing research on left Middle Cerebral Artery strokes (which are the most common type of stroke, by the way) and have found that J.J.'s deficits are very mild and completely in line with this type of stroke. Also, all of the factors that are associated with a positive prognosis are ones he's demonstrating. So that's encouraging, at least.
By the way, I've been receiving praise from our medical personnel for my research skillz. I know more about left MCA strokes than many of them know!
Last night J.J. and I had a conversation about what it felt like to have a stroke. He said he never had any pain, numbness, tingling, or anything like that. He said that when he collapsed on the stairs, it was because he suddenly had no energy, not even enough energy to stay upright. He said that the right side of his body felt normal until he tried to move it, then it felt like each limb weighed a ton. I thought this was very interesting. And I'm glad he wasn't in pain. He even said he really wasn't scared at all because everything still felt the same to him. I told him that I was scared enough for both of us that night. Looking back on it, I'm not sure how I made it through the time between when the ambulance took him away and when Mom arrived to sit with the kids without losing my mind. I can state unequivocably that this was probably the most anxiety-ridden hour of my life. Anyway, it was very healing to finally be able to discuss that night from both points of view and compare notes on what we remember. J.J.'s memory of several of the events seems a little sketchy, but to be honest, some of the things that happened actually occurred outside of his room (like the final conversation I had with the ER doctor about giving the clot-busting drugs, for instance) and I'm not sure if he doesn't remember because he didn't know it was happening or because his memory of that night is faulty. Either way, he's lucky; I know I will never forget.
(I suppose I'm not really off duty because I'll still need to do some cleaning and laundry, but considering that I'm usually trying to squeeze these in while my work computer is booting up or while some kid is getting dressed for lessons of one type or another, this will seem like a vacation!)
We haven't received the results of J.J.'s knee scans yet, but should have some info later today. You'll know as soon as I know.
J.J.'s still making improvements, particularly in his speech and reading. He spends hours each day working on both. I've been doing research on left Middle Cerebral Artery strokes (which are the most common type of stroke, by the way) and have found that J.J.'s deficits are very mild and completely in line with this type of stroke. Also, all of the factors that are associated with a positive prognosis are ones he's demonstrating. So that's encouraging, at least.
By the way, I've been receiving praise from our medical personnel for my research skillz. I know more about left MCA strokes than many of them know!
Last night J.J. and I had a conversation about what it felt like to have a stroke. He said he never had any pain, numbness, tingling, or anything like that. He said that when he collapsed on the stairs, it was because he suddenly had no energy, not even enough energy to stay upright. He said that the right side of his body felt normal until he tried to move it, then it felt like each limb weighed a ton. I thought this was very interesting. And I'm glad he wasn't in pain. He even said he really wasn't scared at all because everything still felt the same to him. I told him that I was scared enough for both of us that night. Looking back on it, I'm not sure how I made it through the time between when the ambulance took him away and when Mom arrived to sit with the kids without losing my mind. I can state unequivocably that this was probably the most anxiety-ridden hour of my life. Anyway, it was very healing to finally be able to discuss that night from both points of view and compare notes on what we remember. J.J.'s memory of several of the events seems a little sketchy, but to be honest, some of the things that happened actually occurred outside of his room (like the final conversation I had with the ER doctor about giving the clot-busting drugs, for instance) and I'm not sure if he doesn't remember because he didn't know it was happening or because his memory of that night is faulty. Either way, he's lucky; I know I will never forget.
Wednesday, March 11, 2009
No News
And apparently the cardiologist did not order the doppler. Of course he didn't. Why make one trip when you can make two?
At least we did get in to see our family doctor, who was very encouraging about J.J.'s progress but who made some of the least helpful coping suggestions I've heard lately, and that's saying something. Make time for a hobby? Does peeing count as a hobby, 'cause there are Cambodian sweatshop workers who get more potty breaks than I do. On the other hand, if being on hold or arguing with medical and/or insurance personnel counts, then I'm all set. Family game night? I play a fun game with my kids every night, called let's-see-if-this-one-remaining-stretched-and-frayed-nerve-of-Mommy's-will-last-until-bedtime. Date night with J.J.? Words cannot even begin to express how far down on my priority list romance is. Unless doing the laundry turns him on, I guess he's pretty much SOL.
Wow, where did this soapbox come from? Let me just put that away...
Anyway, the only big issue to come out of this appointment was that the pain J.J.'s having with his right knee seems like it might be caused by a ligament tear. Which of course meant more scans. My children will no longer need a nightlight; my husband has been exposed to so much radiation he now glows in the dark. Chernobyl, eat your heart out.
I'll let you know what the latest round of scans says as soon as I know more.
In the meantime, I need to call the cardiologist AGAIN to find out what's going on, AGAIN. Then, for novelty's sake, I'M GOING TO ATTEMPT TO DO MY FREAKING JOB. Apparently this does not occur very frequently, at least not with anyone related to J.J.'s stroke. It's like having the Midas touch; everyone I come into contact with lately has all semblance of work ethic sucked out of them.
I'll try to be a little more chipper next time I post. I think my caffeine level has fallen below critical mass, and that's probably a huge part of the problem.
At least we did get in to see our family doctor, who was very encouraging about J.J.'s progress but who made some of the least helpful coping suggestions I've heard lately, and that's saying something. Make time for a hobby? Does peeing count as a hobby, 'cause there are Cambodian sweatshop workers who get more potty breaks than I do. On the other hand, if being on hold or arguing with medical and/or insurance personnel counts, then I'm all set. Family game night? I play a fun game with my kids every night, called let's-see-if-this-one-remaining-stretched-and-frayed-nerve-of-Mommy's-will-last-until-bedtime. Date night with J.J.? Words cannot even begin to express how far down on my priority list romance is. Unless doing the laundry turns him on, I guess he's pretty much SOL.
Wow, where did this soapbox come from? Let me just put that away...
Anyway, the only big issue to come out of this appointment was that the pain J.J.'s having with his right knee seems like it might be caused by a ligament tear. Which of course meant more scans. My children will no longer need a nightlight; my husband has been exposed to so much radiation he now glows in the dark. Chernobyl, eat your heart out.
I'll let you know what the latest round of scans says as soon as I know more.
In the meantime, I need to call the cardiologist AGAIN to find out what's going on, AGAIN. Then, for novelty's sake, I'M GOING TO ATTEMPT TO DO MY FREAKING JOB. Apparently this does not occur very frequently, at least not with anyone related to J.J.'s stroke. It's like having the Midas touch; everyone I come into contact with lately has all semblance of work ethic sucked out of them.
I'll try to be a little more chipper next time I post. I think my caffeine level has fallen below critical mass, and that's probably a huge part of the problem.
Appointment
We'll be leaving in a few minutes to go to see our family doctor. Among other things, I think J.J.'s going to have a doppler today to check his ejection fraction again. Please keep your fingers crossed--I'll keep you updated on what I find out.
Tuesday, March 10, 2009
My new job title...
J.J.'s personal assistant. Call rehabilitative driving program. Call neurologist to get referral to rehabilitative driving program. Call optometrist to get info sent to neurologist so neurologist will make referral to rehabilitative driving program. Call insurance to get preauthorization for rehabilitative driving program. Check status of insurance claims on Anthem's website. Go out on lunch to deposit check insurance company sent to me instead of to provider. Walk to mailbox a block away to mail patient satisfaction survey for rehab and proof of insurance to ambulance company...
And it's only 1:00!
Too bad this gig doesn't pay. I'm pretty good at it...
And it's only 1:00!
Too bad this gig doesn't pay. I'm pretty good at it...
Monday, March 9, 2009
Hello from the car dealership waiting room!
My car is getting an oil change and some recall work done (something having to do with the air conditioner, so nothing real critical) so I'm trying to multitask. That's like the story of my life these days.
I promised an update about the optometrist's appointment. J.J.'s vision has changed very slightly since the stroke, so that his current glasses correct him to 20/25 rather than 20/20. However, his peripheral vision doesn't appear to be impacted at all. They suggested that J.J. see his opthamologist in Columbus because he's developed a really large, dense cataract in his right eye (remember, he doesn't have vision in this eye anyway) that should be addressed, since if it ruptures it could cause an autoimmune response that could be dangerous. They will fax the report to Dr. Acula, then we should be able to get a referral to the rehabilitative driving portion of RHI. I just want to make sure J.J. will be safe behind the wheel. He'll have to retake the driving test before he drives again, and RHI will take care of getting everything set up for this to take place. I know being able to drive again will go a long way toward making J.J. feel more independent.
This afternoon J.J. had both speech and physical therapy. Speech was first; this is only the second appointment J.J. has had as an outpatient. He did much better in several areas than he did last time, particularly in spelling, following multi-step directions, sentence completions and sequencing. It was very encouraging and I attribute a lot of the improvement to getting rid of that medication. He has homework to complete before Thursday's therapy session (working on his handwriting, mostly). We're also supposed to keep playing games and doing crosswords and word finds as much as possible.
Physical therapy was interesting. J.J. is working on higher-level balance functions, such as walking a line by putting the heel of one foot in front of the toes on his other foot (like a tightrope walker), walking sideways by crossing one leg in front and then the other behind (which kind of looks like he's line dancing!), standing on an unstable surface with his eyes closed while the therapist pushes on him and tries to get him to break balance (this one made me extremely nervous!!!) and tapping his toes on a wooden box in front of him. He did wonderfully. The only exercise that didn't go well was the one where he was asked to stand on one foot for 15 seconds. He can do about 8 seconds on the right and about 6 seconds on the left. We'll keep working on this. He has physical therapy again on Thursday.
J.J. is having some pain in his legs that we think is just adjustment to the changes in his gait, but it started bothering him a lot last night. We're keeping an eye on it per the doctor's instructions and have another appointment on Wednesday morning to monitor this.
Tomorrow is J.J.'s day off--no doctor appointments or therapy visits, yay!--but it's a busy day for me at work and Eli has both a drum lesson and a 4H meeting tomorrow evening, so it won't feel particularly low-key. Hopefully J.J. will have dinner waiting on us when we get home since he will have had the house all to himself all day!
I promised an update about the optometrist's appointment. J.J.'s vision has changed very slightly since the stroke, so that his current glasses correct him to 20/25 rather than 20/20. However, his peripheral vision doesn't appear to be impacted at all. They suggested that J.J. see his opthamologist in Columbus because he's developed a really large, dense cataract in his right eye (remember, he doesn't have vision in this eye anyway) that should be addressed, since if it ruptures it could cause an autoimmune response that could be dangerous. They will fax the report to Dr. Acula, then we should be able to get a referral to the rehabilitative driving portion of RHI. I just want to make sure J.J. will be safe behind the wheel. He'll have to retake the driving test before he drives again, and RHI will take care of getting everything set up for this to take place. I know being able to drive again will go a long way toward making J.J. feel more independent.
This afternoon J.J. had both speech and physical therapy. Speech was first; this is only the second appointment J.J. has had as an outpatient. He did much better in several areas than he did last time, particularly in spelling, following multi-step directions, sentence completions and sequencing. It was very encouraging and I attribute a lot of the improvement to getting rid of that medication. He has homework to complete before Thursday's therapy session (working on his handwriting, mostly). We're also supposed to keep playing games and doing crosswords and word finds as much as possible.
Physical therapy was interesting. J.J. is working on higher-level balance functions, such as walking a line by putting the heel of one foot in front of the toes on his other foot (like a tightrope walker), walking sideways by crossing one leg in front and then the other behind (which kind of looks like he's line dancing!), standing on an unstable surface with his eyes closed while the therapist pushes on him and tries to get him to break balance (this one made me extremely nervous!!!) and tapping his toes on a wooden box in front of him. He did wonderfully. The only exercise that didn't go well was the one where he was asked to stand on one foot for 15 seconds. He can do about 8 seconds on the right and about 6 seconds on the left. We'll keep working on this. He has physical therapy again on Thursday.
J.J. is having some pain in his legs that we think is just adjustment to the changes in his gait, but it started bothering him a lot last night. We're keeping an eye on it per the doctor's instructions and have another appointment on Wednesday morning to monitor this.
Tomorrow is J.J.'s day off--no doctor appointments or therapy visits, yay!--but it's a busy day for me at work and Eli has both a drum lesson and a 4H meeting tomorrow evening, so it won't feel particularly low-key. Hopefully J.J. will have dinner waiting on us when we get home since he will have had the house all to himself all day!
Sunday, March 8, 2009
Playlist
You may have noticed the playlist I recently added to the left sidebar of this page. Music is a huge part of our lives and it seemed unnatural not to have some sort of inclusion of this aspect since I'm sharing almost everything else. Each one of the songs I picked has a special meaning for me as it relates to my relationship with J.J.:
1. Such Great Heights, The Postal Service: In addition to being a generally awesome song, this reminds me of the road trip we took in September 2007 to Madison, Wisconsin to attend the Southern Comfort Music Experience. Neither one of us is a big drinker (I might have a few drinks a year, J.J. doesn't drink at all) but the allure of a free music festival was too much to resist! This song was on the CD we listened to almost the entire six hour drive up there and will always remind me of that awesome trip. J.J. and I have always had so much fun road tripping (if you haven't heard about it already, ask me about the trip that ended in Canada!)
2. Pinch Me, Barenaked Ladies: We both like Barenaked Ladies (the band, folks, the band), and I certainly feel like this whole thing has been a dream. Nuff said.
3. Today, Smashing Pumpkins: J.J. REALLY hates Smashing Pumpkins. REALLY. But he didn't object to this being the first song he, Eli and I played together on Guitar Hero World Tour. We rather kick booty as a band.
4. Everlong, Foo Fighters: Right after J.J. had his stroke, it seemed like I couldn't escape this song--it was on every time I turned on the radio! And each time it made me get a lump in my throat; something about the lyric about wondering if it will ever feel this real forever just slays me.
5. In Your Eyes, Peter Gabriel: I've spoken before about my feelings about this song, so I won't go into great detail. Suffice it to say that this song has a lot of meaning for me now.
6. Not Fire, Not Ice, Ben Harper: In the first few days after J.J.'s stroke, he was having a lot of trouble sleeping. I would sit at his bedside and sing to him until I was hoarse in the attempt to drown out the beeping of the machinery, the whirring of his IV pump and the bustling of the nursing staff right outside his door. This song was in heavy rotation.
7. No One Knows, Queens of the Stone Age: Awesome song. Played it lots right after we moved to Indianapolis. It will always remind me of that first dumpy apartment we lived in as a new family.
8. You're the One, Tracy Chapman: There werepeople who were rather skeptical of our relationship in its early days. This song resonates with me because I had several of these types of comments made to me (and I know he heard them about me) but we knew we knew better than everyone else.
9. Jenny Says, Cowboy Mouth: Obviously no playlist would be complete without a track by our favorite band! We've seen Cowboy Mouth live in concert seven times since September 2007. I chose this particular track because of the chorus--I need to remember to "let it go" right now! This is all temporary, I can't let it bring me down too far...
10. Like a Stone, Audioslave: Another road trip song, this one to Chicago on Spring Break with the kids a few years ago. I remember both of us belting this out while both of the kids slept in the backseat.
11. Ice Cream, Sarah McLachlan: Not long after we started dating, J.J. made me a mix tape (remember those?) This was the first song on it. I wore that sucker out listening to it on my Walkman while I hiked around campus.
12. Only One Friend Left, Dan Seals: My parents were country fans when I was growing up, so I know a lot of old-school country. I've sang this one for J.J. probably hundreds of times since our relationship started, including in the ICU. It just fits.
13. I Want You, Elvis Costello: One of J.J.'s favorite performers, and one of his favorite songs by that performer. This was also on that mix tape he made me, by the way...
14. What It Is, Mark Knopfler: This is another of J.J.'s favorite songs--in fact, he walked by as I was adding it and said, "That's such a great song". It always reminds me of him.
15. Cry Love, John Hiatt: J.J. is a big John Hiatt fan. Cry Love is, in my opinion, one of the best John Hiatt songs ever. And there's been a whole lot of crying happening lately along with lots of love, so it fits!
16. Send Me on My Way, Rusted Root: Ah, the quintessential college band! I bought this CD the summer between my sophomore and junior years of college when I stayed with J.J. in Columbus. This song will always remind me of that sun-drenched, carefree summer when we were so young.
17. Surround Me, The Why Store: We love this band and are so happy they seem to be performing on a regular basis now! I couldn't find the actual album version but this live version is good too.
18. Hush, Angie Aparo: J.J. loves this song. I could take it or leave it. But I remember very vividly listening to it right as we pulled into our driveway when we were bringing Leah home from the hospital.
19. As Tall As Cliffs, Margot & the Nuclear So and So's: I heard this song and loved it. I wanted the CD, didn't want to order it online but was having trouble finding time to go shopping for it. J.J. bought it and loaded it into the CD player in my car the next day as a surprise. He's extremely thoughtful like that!
20. Ride Forever, Paul Gross: I HATE THIS SONG!!!! J.J. loves it; I think it either was featured on the TV show Due South or is by the person who did the theme music for the show? Don't care enough to look it up, I just remember gritting my teeth and smiling on many occasions while he had this track on repeat...
21. Calling You, Blue October: While I was finishing college, J.J. and I were in a long-distance relationship for over two years. He was working from 6:00 p.m. to 2:30 a.m. then and would call me every day when he got home from work (at like 3:00 in the morning!) I hated being woken up but loved getting to wake up to hear his voice. Even though this song didn't come out until after those days were over, the chorus reminds me of how cute and young and in love we were back then!
So much of the music I wanted to put on this list wasn't available--bad thing about having obscure and diverse taste in music, I guess--but you get the drift. Enjoy!
1. Such Great Heights, The Postal Service: In addition to being a generally awesome song, this reminds me of the road trip we took in September 2007 to Madison, Wisconsin to attend the Southern Comfort Music Experience. Neither one of us is a big drinker (I might have a few drinks a year, J.J. doesn't drink at all) but the allure of a free music festival was too much to resist! This song was on the CD we listened to almost the entire six hour drive up there and will always remind me of that awesome trip. J.J. and I have always had so much fun road tripping (if you haven't heard about it already, ask me about the trip that ended in Canada!)
2. Pinch Me, Barenaked Ladies: We both like Barenaked Ladies (the band, folks, the band), and I certainly feel like this whole thing has been a dream. Nuff said.
3. Today, Smashing Pumpkins: J.J. REALLY hates Smashing Pumpkins. REALLY. But he didn't object to this being the first song he, Eli and I played together on Guitar Hero World Tour. We rather kick booty as a band.
4. Everlong, Foo Fighters: Right after J.J. had his stroke, it seemed like I couldn't escape this song--it was on every time I turned on the radio! And each time it made me get a lump in my throat; something about the lyric about wondering if it will ever feel this real forever just slays me.
5. In Your Eyes, Peter Gabriel: I've spoken before about my feelings about this song, so I won't go into great detail. Suffice it to say that this song has a lot of meaning for me now.
6. Not Fire, Not Ice, Ben Harper: In the first few days after J.J.'s stroke, he was having a lot of trouble sleeping. I would sit at his bedside and sing to him until I was hoarse in the attempt to drown out the beeping of the machinery, the whirring of his IV pump and the bustling of the nursing staff right outside his door. This song was in heavy rotation.
7. No One Knows, Queens of the Stone Age: Awesome song. Played it lots right after we moved to Indianapolis. It will always remind me of that first dumpy apartment we lived in as a new family.
8. You're the One, Tracy Chapman: There werepeople who were rather skeptical of our relationship in its early days. This song resonates with me because I had several of these types of comments made to me (and I know he heard them about me) but we knew we knew better than everyone else.
9. Jenny Says, Cowboy Mouth: Obviously no playlist would be complete without a track by our favorite band! We've seen Cowboy Mouth live in concert seven times since September 2007. I chose this particular track because of the chorus--I need to remember to "let it go" right now! This is all temporary, I can't let it bring me down too far...
10. Like a Stone, Audioslave: Another road trip song, this one to Chicago on Spring Break with the kids a few years ago. I remember both of us belting this out while both of the kids slept in the backseat.
11. Ice Cream, Sarah McLachlan: Not long after we started dating, J.J. made me a mix tape (remember those?) This was the first song on it. I wore that sucker out listening to it on my Walkman while I hiked around campus.
12. Only One Friend Left, Dan Seals: My parents were country fans when I was growing up, so I know a lot of old-school country. I've sang this one for J.J. probably hundreds of times since our relationship started, including in the ICU. It just fits.
13. I Want You, Elvis Costello: One of J.J.'s favorite performers, and one of his favorite songs by that performer. This was also on that mix tape he made me, by the way...
14. What It Is, Mark Knopfler: This is another of J.J.'s favorite songs--in fact, he walked by as I was adding it and said, "That's such a great song". It always reminds me of him.
15. Cry Love, John Hiatt: J.J. is a big John Hiatt fan. Cry Love is, in my opinion, one of the best John Hiatt songs ever. And there's been a whole lot of crying happening lately along with lots of love, so it fits!
16. Send Me on My Way, Rusted Root: Ah, the quintessential college band! I bought this CD the summer between my sophomore and junior years of college when I stayed with J.J. in Columbus. This song will always remind me of that sun-drenched, carefree summer when we were so young.
17. Surround Me, The Why Store: We love this band and are so happy they seem to be performing on a regular basis now! I couldn't find the actual album version but this live version is good too.
18. Hush, Angie Aparo: J.J. loves this song. I could take it or leave it. But I remember very vividly listening to it right as we pulled into our driveway when we were bringing Leah home from the hospital.
19. As Tall As Cliffs, Margot & the Nuclear So and So's: I heard this song and loved it. I wanted the CD, didn't want to order it online but was having trouble finding time to go shopping for it. J.J. bought it and loaded it into the CD player in my car the next day as a surprise. He's extremely thoughtful like that!
20. Ride Forever, Paul Gross: I HATE THIS SONG!!!! J.J. loves it; I think it either was featured on the TV show Due South or is by the person who did the theme music for the show? Don't care enough to look it up, I just remember gritting my teeth and smiling on many occasions while he had this track on repeat...
21. Calling You, Blue October: While I was finishing college, J.J. and I were in a long-distance relationship for over two years. He was working from 6:00 p.m. to 2:30 a.m. then and would call me every day when he got home from work (at like 3:00 in the morning!) I hated being woken up but loved getting to wake up to hear his voice. Even though this song didn't come out until after those days were over, the chorus reminds me of how cute and young and in love we were back then!
So much of the music I wanted to put on this list wasn't available--bad thing about having obscure and diverse taste in music, I guess--but you get the drift. Enjoy!
Sunday
I know it's been a while since I posted. We're fine, just not doing much that's worth reporting. I'm trying to get caught up on filing, cleaning out closets and doing some INHP work. I'm also getting ready to get started on making tonight's dinner in just a little bit (we're having lasagna). J.J.'s downstairs doing who knows what, kids just got home and are bouncing around the house. Overall, pretty typical Sunday.
Tomorrow I should have more to report on, since J.J. will be seeing an optometrist who specializes in vision changes due to strokes and will have both physical and speech therapy. I think my mother-in-law is also planning to come over tomorrow to stay for the rest of the week. So look for more updates tomorrow, and until then, hope you enjoy the rest of your weekend!
Tomorrow I should have more to report on, since J.J. will be seeing an optometrist who specializes in vision changes due to strokes and will have both physical and speech therapy. I think my mother-in-law is also planning to come over tomorrow to stay for the rest of the week. So look for more updates tomorrow, and until then, hope you enjoy the rest of your weekend!
Saturday, March 7, 2009
Difference
J.J. stopped taking that medication we were concerned about Thursday after his appointment with Dr. Acula. By yesterday morning, I noticed a big improvement in his ability to follow conversations. Last night I noticed a big improvement in his reading comprehension. We also had a conversation about some of his fears and what exactly happened the night of his stroke. I mean, this was deep for someone who has aphasia and apraxia. His speech is not 100% by any stretch of the imagination, but it has really improved. And he's only been off the medication for a day! I think we'll see even more improvement today.
Kids are at my parents' house this weekend again, but I'm hoping this will be the last time for a while. I really just needed a weekend to get caught up on my rest, then I think things will be better.
I have a hair appointment at 9:00 (and boy, do I need it!) so I'd better begin getting ready....
Oh, if all of you could say a quick prayer for our friend Nova. She had surgery yesterday to repair a hernia and ended up having more pain than expected and is back in the hospital. She's been so good to us throughout this whole ordeal, it doesn't seem fair that she would have complications. Besides, I've spent quite enough time at hospitals lately, so she needs to get out before I'm forced to go visit yet again. I'm afraid if I darken the hospital's doorstep one more time, I'll be given a lab coat and be put to work! Anyway, please pray for healing for Nova.
Kids are at my parents' house this weekend again, but I'm hoping this will be the last time for a while. I really just needed a weekend to get caught up on my rest, then I think things will be better.
I have a hair appointment at 9:00 (and boy, do I need it!) so I'd better begin getting ready....
Oh, if all of you could say a quick prayer for our friend Nova. She had surgery yesterday to repair a hernia and ended up having more pain than expected and is back in the hospital. She's been so good to us throughout this whole ordeal, it doesn't seem fair that she would have complications. Besides, I've spent quite enough time at hospitals lately, so she needs to get out before I'm forced to go visit yet again. I'm afraid if I darken the hospital's doorstep one more time, I'll be given a lab coat and be put to work! Anyway, please pray for healing for Nova.
Friday, March 6, 2009
Cute Kids
Just a couple of examples of how cute my kids are...
Last night Eli and I were having a conversation about charitable giving and why it's important. He decided that if he had $1 million to give to charity, he would give 1/3 of it to the Ronald McDonald House (we're partial to them since my parents had to stay there many years ago while my sister was hospitalized at Riley), 1/3 of it to INHP and 1/3 of it to the American Heart Association, "so they can figure out why people have strokes and how to make them stop". It just melted my heart to listen to him reasoning all of this out so logically.
This morning Leah was playing with one of her Littlest Pet Shop pets. She put him in a bed and said she had to take care of him because he was "poor" (in Leah-speak, this means sick or not feeling well...like, "Oh, poor Daddy!"). I asked her what was wrong with him, and she reported that he had a stroke and needed someone to help him. She says when he can walk again he can go back in the clubhouse with the other pets. Which I suppose mirrors what happened with her dad, at least in her mind. I just thought it was cute, even though I really wish my 4 year old was still blissfully unaware of what a stroke is.
Last night Eli and I were having a conversation about charitable giving and why it's important. He decided that if he had $1 million to give to charity, he would give 1/3 of it to the Ronald McDonald House (we're partial to them since my parents had to stay there many years ago while my sister was hospitalized at Riley), 1/3 of it to INHP and 1/3 of it to the American Heart Association, "so they can figure out why people have strokes and how to make them stop". It just melted my heart to listen to him reasoning all of this out so logically.
This morning Leah was playing with one of her Littlest Pet Shop pets. She put him in a bed and said she had to take care of him because he was "poor" (in Leah-speak, this means sick or not feeling well...like, "Oh, poor Daddy!"). I asked her what was wrong with him, and she reported that he had a stroke and needed someone to help him. She says when he can walk again he can go back in the clubhouse with the other pets. Which I suppose mirrors what happened with her dad, at least in her mind. I just thought it was cute, even though I really wish my 4 year old was still blissfully unaware of what a stroke is.
Friday
Thank goodness it's Friday! For the first time since this all happened, the fact that we're coming up on a weekend actually means something.
Eli has a really awful cough and doesn't have ISTEP testing today, so he's going to be staying home. Well, he's going to be staying home after we drop Leah off at preschool, drop J.J. off at physical therapy, go get my allergy shot, pick J.J. back up and drop the guys back off at home. I'm hopeful that I'll make it in to work by 10:00--wish me luck! So far Leah's only mildly sniffly and I've been popping Zicam like crazy to ward it off. I don't feel any worse, so I think it's working.
I just finished dealing out J.J.'s morning pills. I'm getting really good at this. I don't even need to consult his medication guide from his doctor anymore! We are extremely fortunate that almost all of J.J.'s meds are generics; two are even on the $4 list at Walmart. His monthly prescription cost is about $50. It could be so much worse.
I haven't updated on J.J.'s progress for a couple of days because I feel like I keep saying the same things. Physically he's basically back to where he was before the stroke. His speech is getting better all the time--yesterday evening I think there were only three times that he got stuck looking for a word and wasn't able to talk around it (talking around it=seeing if he can find a different word that means the same thing or describing the object he is speaking of. Nouns still seem to be the biggest problem, particularly proper nouns). His reading is getting better too. I had started reading signs and labels aloud in case he couldn't read them, and he has asked me to stop--he definitely can do those now. He's still having trouble reading the newspaper or books, although he has been able to read recipe books in the last day or so.
J.J. is spending large amounts of each day working on speech therapy exercises and working on his reading. He's been doing crossword puzzles for hours daily and we've played countless games of Uno (many of his speech therapy exercises are board or card games. Who knew they were so therapeutic?). He's committed himself to the idea that his full time job is to recover as quickly as he can. At this rate, I don't think he'll be off work for long.
Well, I need to get the trash out for pickup and start getting ready for work. If I can get in by 10:00, I'll be able to get seven hours done at the office today and will have only another hour to make up tonight. How awesome is that?
Eli has a really awful cough and doesn't have ISTEP testing today, so he's going to be staying home. Well, he's going to be staying home after we drop Leah off at preschool, drop J.J. off at physical therapy, go get my allergy shot, pick J.J. back up and drop the guys back off at home. I'm hopeful that I'll make it in to work by 10:00--wish me luck! So far Leah's only mildly sniffly and I've been popping Zicam like crazy to ward it off. I don't feel any worse, so I think it's working.
I just finished dealing out J.J.'s morning pills. I'm getting really good at this. I don't even need to consult his medication guide from his doctor anymore! We are extremely fortunate that almost all of J.J.'s meds are generics; two are even on the $4 list at Walmart. His monthly prescription cost is about $50. It could be so much worse.
I haven't updated on J.J.'s progress for a couple of days because I feel like I keep saying the same things. Physically he's basically back to where he was before the stroke. His speech is getting better all the time--yesterday evening I think there were only three times that he got stuck looking for a word and wasn't able to talk around it (talking around it=seeing if he can find a different word that means the same thing or describing the object he is speaking of. Nouns still seem to be the biggest problem, particularly proper nouns). His reading is getting better too. I had started reading signs and labels aloud in case he couldn't read them, and he has asked me to stop--he definitely can do those now. He's still having trouble reading the newspaper or books, although he has been able to read recipe books in the last day or so.
J.J. is spending large amounts of each day working on speech therapy exercises and working on his reading. He's been doing crossword puzzles for hours daily and we've played countless games of Uno (many of his speech therapy exercises are board or card games. Who knew they were so therapeutic?). He's committed himself to the idea that his full time job is to recover as quickly as he can. At this rate, I don't think he'll be off work for long.
Well, I need to get the trash out for pickup and start getting ready for work. If I can get in by 10:00, I'll be able to get seven hours done at the office today and will have only another hour to make up tonight. How awesome is that?
Thursday, March 5, 2009
Early Night
Since neither of the kids had activities tonight and J.J. had dinner ready when we got home, I've been able to finish my INHP work early. I'm off to read a trashy celebrity gossip magazine and cuddle with my husband. I'll update in the morning. Until then, good night!
Interview with the Vampire
Dr. Acula, that is...
To sum up, we got J.J. off the medication we were concerned about. Dr. Acula was hesitant to make the change but I presented a well-researched argument and got him to change his mind. Which is fortunate, because I really didn't have time to get a second opinion (although I suppose Dr. Awesome Neurologist counts as the second opinion? Who knows). Anyway, this eliminates the need for J.J. to have blood tests twice a week as well, which definitely helps out our schedule.
Dr. Acula is encouraged by J.J.'s progress and doesn't need to see him back for three months. The only other real news to come out of the appointment is J.J.'s weight--he's down 74 lbs. When the cardiologist told J.J. he needed to lose at least 100 lbs., I didn't know he meant this month...
I'll update more tonight, but for now, I must get some work done!
To sum up, we got J.J. off the medication we were concerned about. Dr. Acula was hesitant to make the change but I presented a well-researched argument and got him to change his mind. Which is fortunate, because I really didn't have time to get a second opinion (although I suppose Dr. Awesome Neurologist counts as the second opinion? Who knows). Anyway, this eliminates the need for J.J. to have blood tests twice a week as well, which definitely helps out our schedule.
Dr. Acula is encouraged by J.J.'s progress and doesn't need to see him back for three months. The only other real news to come out of the appointment is J.J.'s weight--he's down 74 lbs. When the cardiologist told J.J. he needed to lose at least 100 lbs., I didn't know he meant this month...
I'll update more tonight, but for now, I must get some work done!
There's good news and there's bad news...
The good news is that I don't think Eli has strep throat after all. The bad news is that he seems to have a cold, and I think Leah and I are right behind him in coming down with it. My throat is really sore and my sinuses are congested. This will definitely complicate things.
I'm getting ready to run into town to go to a board meeting at Family Development Services and then I'll come back to pick up J.J. We have an appointment with Dr. Acula at 10:45. I'll report back on how that went as soon as I can.
I'm getting ready to run into town to go to a board meeting at Family Development Services and then I'll come back to pick up J.J. We have an appointment with Dr. Acula at 10:45. I'll report back on how that went as soon as I can.
Wednesday, March 4, 2009
Complications
As if my life is not complicated enough...
Leah woke up at 2:00 a.m. screaming about ghosts in her room. By the time I got her back down, I was awake. This four hours of sleep per night thing must stop, pronto.
I am fairly certain that Eli is coming down with strep throat again. For those of you who are unaware, my son gets strep about every three months or so. It's only been about six weeks since the last time, though, so he's outdone himself. I sent him to school so he could do his ISTEP testing this morning just in case it's only sinus drainage. I told him to call after ISTEPs were done if he needs me to pick him up. Either way, I think we'll be fitting a doctor appointment into the schedule today for him. That's in between my first full day in the office (as opposed to working at home for part of the day) since 2/13/09, Young Gospel Choir practice for Eli and swimming lessons for Leah. Oh, and doing both PT and speech exercises with J.J. tonight. And cleaning, cooking, laundry, etc. And paying bills.
I'm starting to feel like I'm running a marathon and someone keeps moving the finish line farther away.
Leah woke up at 2:00 a.m. screaming about ghosts in her room. By the time I got her back down, I was awake. This four hours of sleep per night thing must stop, pronto.
I am fairly certain that Eli is coming down with strep throat again. For those of you who are unaware, my son gets strep about every three months or so. It's only been about six weeks since the last time, though, so he's outdone himself. I sent him to school so he could do his ISTEP testing this morning just in case it's only sinus drainage. I told him to call after ISTEPs were done if he needs me to pick him up. Either way, I think we'll be fitting a doctor appointment into the schedule today for him. That's in between my first full day in the office (as opposed to working at home for part of the day) since 2/13/09, Young Gospel Choir practice for Eli and swimming lessons for Leah. Oh, and doing both PT and speech exercises with J.J. tonight. And cleaning, cooking, laundry, etc. And paying bills.
I'm starting to feel like I'm running a marathon and someone keeps moving the finish line farther away.
Anniversary
My love,
I know you can't read this right now, but I have no doubt you will soon.
This is the day on which I committed to make your life part of mine, forever. I swore that your lips would be the last ones to touch mine. I promised to love you no matter what may come our way. And with everything that has happened over the last seventeen days, I want you to know that I still view that decision as the best I ever made.
Sure, this isn't the way I had pictured spending our anniversary, but considering that there was a time recently when I didn't know if I'd get to spend this day with you, I'll take it!
I would never wish a stroke on my worst enemy, much less on the man I love. However, I do think there has been some good that's come from this. You always thought I loved you--now you know I do. You always hoped I'd be there for you if you weren't able to take care of yourself--now you know I will be there. If this was a test, I think our marriage passed with flying colors.
I know we will come out of this stronger than we ever were before. I know we'll have many more years together. And I know that we'll continue to handle what life throws at us with grace and with love.
I love you. Today more than yesterday. Tomorrow more than today. Forever.
I know you can't read this right now, but I have no doubt you will soon.
This is the day on which I committed to make your life part of mine, forever. I swore that your lips would be the last ones to touch mine. I promised to love you no matter what may come our way. And with everything that has happened over the last seventeen days, I want you to know that I still view that decision as the best I ever made.
Sure, this isn't the way I had pictured spending our anniversary, but considering that there was a time recently when I didn't know if I'd get to spend this day with you, I'll take it!
I would never wish a stroke on my worst enemy, much less on the man I love. However, I do think there has been some good that's come from this. You always thought I loved you--now you know I do. You always hoped I'd be there for you if you weren't able to take care of yourself--now you know I will be there. If this was a test, I think our marriage passed with flying colors.
I know we will come out of this stronger than we ever were before. I know we'll have many more years together. And I know that we'll continue to handle what life throws at us with grace and with love.
I love you. Today more than yesterday. Tomorrow more than today. Forever.
Tuesday, March 3, 2009
Assessment Results
The physical therapy assessment was pretty odd, actually. J.J. is definitely far beyond the level of function that most of the other patients in the gym are at. His assessment had him doing things like time tests of how far he could walk in a certain time frame or how many stairs he could climb in two minutes. The therapist also tested the strength of J.J.'s major muscle groups, contrasting his left side with the right (the affected side). The only real difference she saw was in J.J.'s hip flexors, so J.J. will be doing lots of leg lifts. I told him we'll pick up a leotard and a sweatband. He'll be fabulous! Anyway, he will be doing PT twice a week for 2-4 weeks. He's scheduled right now for the full four weeks since it's easier to cancel the appointments we don't need than to add more appointments without much notice, but she feels he'll be ready for discharge in two weeks.
Speech therapy was a different story. J.J. is definitely beyond where he was last week but still has pretty significant speech deficits. His reading needs work and his writing has also been impacted. The therapist feels very optimistic about J.J.'s prognosis and thinks he'll be back to work within 1-3 months (from her lips to God's ears!). He has been scheduled for sessions three times a week for 8 weeks.
The only other really interesting news to come out of today is that we bought new clothes for J.J. today, and his waist size is down 10 inches. As of today, he's lost 67 lbs. since the doctor appointment he had one week before the stroke (so, in 3.5 weeks). How long before someone tries to market strokes as the miracle weight loss cure?
Speech therapy was a different story. J.J. is definitely beyond where he was last week but still has pretty significant speech deficits. His reading needs work and his writing has also been impacted. The therapist feels very optimistic about J.J.'s prognosis and thinks he'll be back to work within 1-3 months (from her lips to God's ears!). He has been scheduled for sessions three times a week for 8 weeks.
The only other really interesting news to come out of today is that we bought new clothes for J.J. today, and his waist size is down 10 inches. As of today, he's lost 67 lbs. since the doctor appointment he had one week before the stroke (so, in 3.5 weeks). How long before someone tries to market strokes as the miracle weight loss cure?
Busy Day
Sorry about the lack of an end of the day update yesterday--I got everything done that I set out to do except for updating the blog! I'm finding that even though I'm getting a lot more sleep since J.J. came home, I'm exhausted mentally at the end of the day from what is essentially an ongoing game of charades. "You're hungry? No--thirsty? No--bored? Yes? You want a book? No--TV? No--game? Yes? Okay, cards? Yes? Poker? No--Rummy? No--Uno? Uno? You want to play Uno?" Sheesh.
This morning after we drop the kids off at school we'll go to the hospital to get J.J.'s labwork done. Then we're going down to the outlet mall to buy some more new clothes for J.J.--some of the stuff I bought for him before still has tags, so we'll exchange it for the right sizes, too. Then to RHI for physical/speech therapy. Then back home to meet the woman who is buying the lot of Leah's clothes that I posted on Craigslist. Somewhere along the way we need to get the disability paperwork over to R.W. Armstrong, stop by the dollar store to buy hangers (hey, now that all of our clothes are clean at the same time, we're out!), find a place to mail some stuff and drop off a prescription to be filled. Then we pick up the kids--Eli has drum lessons tonight. See, I obviously don't have time to work!
Please be thinking good thoughts this morning regarding J.J.'s speech therapy assessment. Right now they only have him penciled in for two sessions a week, but I'm going to try to get them to add a third. I can be very persuasive when I need to be :)
This morning after we drop the kids off at school we'll go to the hospital to get J.J.'s labwork done. Then we're going down to the outlet mall to buy some more new clothes for J.J.--some of the stuff I bought for him before still has tags, so we'll exchange it for the right sizes, too. Then to RHI for physical/speech therapy. Then back home to meet the woman who is buying the lot of Leah's clothes that I posted on Craigslist. Somewhere along the way we need to get the disability paperwork over to R.W. Armstrong, stop by the dollar store to buy hangers (hey, now that all of our clothes are clean at the same time, we're out!), find a place to mail some stuff and drop off a prescription to be filled. Then we pick up the kids--Eli has drum lessons tonight. See, I obviously don't have time to work!
Please be thinking good thoughts this morning regarding J.J.'s speech therapy assessment. Right now they only have him penciled in for two sessions a week, but I'm going to try to get them to add a third. I can be very persuasive when I need to be :)
Monday, March 2, 2009
Early Afternoon Update
We're waiting for the tile guy to call with an ETA on when he might be coming to measure the bathroom. After we get this accomplished, we need to go out to pick up J.J.'s short term disability paperwork from Dr. Acula's office and pick up the kids. Eli's hair is truly tragic. It must be cut today!
The last word from Dr. Acula is that he wants J.J. to have a lab test done before he changes out the medication that Dr. Awesome Neurologist was concerned about. So we'll have that drawn tomorrow and we'll see Dr. Acula on Thursday. Keep your fingers crossed--one of the side effects of this medication is diminished ability to concentrate and short-term memory problems, so I think if we get J.J. switched off of it he may be able to devote more energy to his recovery.
I now know more about neuroscience, the brain, anti-coagulants and strokes than I ever dreamed I would know. I think I need an honorary medical degree when this is all over.
Anyway, today has been good so far. After dropping the kids off at school, we went to INHP for a few minutes so I could take care of a few urgent things. We were only there for 45 minutes or so. I think J.J. enjoyed everyone telling him how good he looks (which is totally true!) but social interaction takes a lot out of him right now. Since we've been home, we've been cleaning the house (now that it's in showroom condition, I want to keep it this way!) and I've been making phone calls. It's been a fairly mellow day in comparision to what tomorrow will look like...
We're going to enjoy our rest while we can get it.
The last word from Dr. Acula is that he wants J.J. to have a lab test done before he changes out the medication that Dr. Awesome Neurologist was concerned about. So we'll have that drawn tomorrow and we'll see Dr. Acula on Thursday. Keep your fingers crossed--one of the side effects of this medication is diminished ability to concentrate and short-term memory problems, so I think if we get J.J. switched off of it he may be able to devote more energy to his recovery.
I now know more about neuroscience, the brain, anti-coagulants and strokes than I ever dreamed I would know. I think I need an honorary medical degree when this is all over.
Anyway, today has been good so far. After dropping the kids off at school, we went to INHP for a few minutes so I could take care of a few urgent things. We were only there for 45 minutes or so. I think J.J. enjoyed everyone telling him how good he looks (which is totally true!) but social interaction takes a lot out of him right now. Since we've been home, we've been cleaning the house (now that it's in showroom condition, I want to keep it this way!) and I've been making phone calls. It's been a fairly mellow day in comparision to what tomorrow will look like...
We're going to enjoy our rest while we can get it.
Aphasiac Help Desk Support
I started running a scan on my system this morning because I'm getting more pop-ups than usual and I know from watching J.J. often enough that this is the first step he takes. Of course, he's all over this--it's finally something he can do to be helpful!--and as long as he isn't trying to explain what he's doing, he's functioning pretty well. When he tries to explain, though, well...
"The stuff you have running...it has a thing...it's putting the thing on your computer...that's what makes it happen."
I think he's referring to cookies? Whatever. It sounds very similar to the way I would give help desk instructions.
Considering that a week ago the man couldn't repeat single syllables after me (say "puh", J.J.!) I think he's doing remarkably well.
"The stuff you have running...it has a thing...it's putting the thing on your computer...that's what makes it happen."
I think he's referring to cookies? Whatever. It sounds very similar to the way I would give help desk instructions.
Considering that a week ago the man couldn't repeat single syllables after me (say "puh", J.J.!) I think he's doing remarkably well.
Observation
I just noticed that the socks J.J. wore to church last night are in the middle of the bedroom floor.
All is right with the world.
All is right with the world.
Sunday, March 1, 2009
End of Day Post
We just got home from church. Eli sang with the Young Gospel Choir tonight, and after service we had cake in the fellowship hall. It felt incredibly good to do something so normal as a family again.
I'm tired and want to go lay down with my husband. I'll do a more thorough update in the morning. Just know that all is well.
P.S. It's now been two weeks since J.J.'s stroke.
It feels like a lifetime.
I'm tired and want to go lay down with my husband. I'll do a more thorough update in the morning. Just know that all is well.
P.S. It's now been two weeks since J.J.'s stroke.
It feels like a lifetime.
Overprotective
It's so hard not to hover around J.J. right now. He's shown that he can make it up and down the stairs easily, but it scares me half to death to let him do it alone. He made his own breakfast (granted, it was only microwave pancakes, but he still had to figure out how long to put them in and which buttons to press in which sequence on the microwave) and I had to resist the urge to watch as he did it to make sure he wasn't going to burn the whole place down. Every time he stands up, I ask where he's going. I know he's got to be getting tired of the extra attention, but he's putting up with it. For my part, I'm trying to give him enough freedom to start feeling a little more normal while balancing that against my need to keep him safe. I know this will continue to get better.
Having J.J. home has made a big difference in his speech. He's been able to communicate with me a lot more. He's even managed to log into his computer (I didn't know the password--he's figured it out, although it took him a few tries to remember it) but is still having trouble reading well enough to do much with it. This is all connected with the trouble he's had with his speech; the area of J.J.'s brain most impacted by his stroke is called Broca's area (http://http://en.wikipedia.org/wiki/Broca%27s_Aphasia). Reading comprehension is sometimes impacted by damage to this area. It's coming back, kind of like with his speech, but is a little slower to recover because J.J. is not reading as much as he's speaking. He is able to read sentences, phrases and paragraphs, but when confronted with pages of written material he gives up. Some of this is also a concentration issue--it's not even quite two weeks since the stroke, and he's still very tired.
He's been making jealous noises when I type or read. I keep reminding him that it won't be long until he'll be doing everything again--he just needs to be patient. Looking back at the entries I made last week at this time, I can't believe how far he's come. By next week at this time, I bet his reading will be significantly better.
Our kids will be home at about 3:00 today. J.J. can't wait to see them. I can't wait to get Eli to clean up his room so I can sweep it. Whoever invented Legos obviously was not a mother.
Having J.J. home has made a big difference in his speech. He's been able to communicate with me a lot more. He's even managed to log into his computer (I didn't know the password--he's figured it out, although it took him a few tries to remember it) but is still having trouble reading well enough to do much with it. This is all connected with the trouble he's had with his speech; the area of J.J.'s brain most impacted by his stroke is called Broca's area (http://http://en.wikipedia.org/wiki/Broca%27s_Aphasia). Reading comprehension is sometimes impacted by damage to this area. It's coming back, kind of like with his speech, but is a little slower to recover because J.J. is not reading as much as he's speaking. He is able to read sentences, phrases and paragraphs, but when confronted with pages of written material he gives up. Some of this is also a concentration issue--it's not even quite two weeks since the stroke, and he's still very tired.
He's been making jealous noises when I type or read. I keep reminding him that it won't be long until he'll be doing everything again--he just needs to be patient. Looking back at the entries I made last week at this time, I can't believe how far he's come. By next week at this time, I bet his reading will be significantly better.
Our kids will be home at about 3:00 today. J.J. can't wait to see them. I can't wait to get Eli to clean up his room so I can sweep it. Whoever invented Legos obviously was not a mother.
Subscribe to:
Posts (Atom)