In about a half an hour, ten weeks will have passed since J.J.'s stroke. He's made a lot of progress during that ten weeks. I've made a lot of progress in that ten weeks. Our marriage has made a lot of progress in that ten weeks. I feel like a completely different person now than I was then.
This weekend has been kind of challenging. First of all, yesterday was my sweet baby boy's birthday. Eli is 9! I'll post his birthday slideshow tomorrow; I've been so busy lately I haven't had time to put the finishing touches on it. Anyway, it was a day for celebration.
At the same time, J.J. started a new medication on Thursday after his doctor's appointment and started displaying symptoms of a deep depression yesterday afternoon. I convinced him not to take it last night and by this morning he was back to himself. It was a scary few hours, though. He has an appointment with our doctor tomorrow morning anyway, so we're definitely going to check with her to see if there's anything else he can take.
This afternoon we attended at barbecue at our best friend's house. It was astonishing that several people who have never met J.J. didn't notice anything was wrong until he got going in a deep conversation and twisted a concept around. I translated (I'm getting really good at J.J.-to-English!) and informed them that J.J.'s ten weeks out from a stroke. They didn't believe me at first!
I also had a dream this morning that I formed a nonprofit organization for young stroke survivors and their caregivers. I woke up thinking, well, why not? I haven't been able to find a whole lot of info on the topic, maybe I could at least put together a clearinghouse of information. So my hope is to research the topic thoroughly this year, and perhaps have something put together for launch by May 1, 2010 (May being National Stroke Awareness Month). More on this will follow, I'm sure!
My husband is lying in bed behind me, reading. I'm going to go interrupt him :)
Sunday, April 26, 2009
Thursday, April 23, 2009
Recap
I've been so drained lately by work and this frackin' cold that doesn't seem to want to leave me alone that blogging has been slightly beyond my abilities. Don't give up on me, I'll try to do better.
Today J.J. went to see our family doctor alone (the first time since his stroke that I've not tagged along to a doctor visit). He's still having trouble with his knee, so he had another round of scans and will be seeing an orthopedic specialist on Monday. His hair is also falling out handfuls at a time; along with some other symptoms he's having, this might indicate that his thyroid is not functioning adequately. This sometimes results from a stroke and is often due to the pituitary (located in the brain, not terribly far from the location of J.J.'s stroke) not sending the right signals to the thyroid to produce and release T3 and T4. He's having blood drawn and we'll get results in the next couple of days. His blood pressure is back up a little (140/90), so he will be returning to the doctor's office twice a week for the next few weeks to monitor this. It might be that he needs a medication change for this.
I'm starting to forget what J.J.'s voice sounded like before the stroke, which is both good and bad, I suppose. Good because I'm getting used to him sounding the way he does now. Bad because I don't want to forget. I may never hear it in person again; I'd like to at least retain it in my memory. But in any case, time marches on and J.J. is getting much more conversational again. He still has a few words that appear to be missing from his vocabulary that are taking longer to return (the most recent discovery is the word "kitchen"), but for the most part if he takes his time and doesn't rush he does just fine.
The CPAP is still a struggle for J.J. He's having lots of trouble getting used to it, but he's giving it a chance, which is all I can ask. If he still hasn't adjusted to it by next week's sleep study, he may be switched to wearing oxygen at night.
Everything else is going pretty well here. Kids are doing fine; Eli's birthday is Saturday so we're gearing up for the big day. Due to my company's big event on Saturday and J.J.'s sleep study next Friday night, I think it's going to be the weekend of May 8 before we have his sleepover, which is the birthday party he's requested this year. But my parents will be coming over Saturday to take him to Toys R Us to spend his birthday money, and we're having cupcakes Saturday evening, and honestly I think he'll be so busy he won't even notice.
That's about all the news that's fit to print. Now I must go check on the progress of dinner (Eli is assisting J.J. to put together a meatloaf) and prepare to make it an early night tonight!
Today J.J. went to see our family doctor alone (the first time since his stroke that I've not tagged along to a doctor visit). He's still having trouble with his knee, so he had another round of scans and will be seeing an orthopedic specialist on Monday. His hair is also falling out handfuls at a time; along with some other symptoms he's having, this might indicate that his thyroid is not functioning adequately. This sometimes results from a stroke and is often due to the pituitary (located in the brain, not terribly far from the location of J.J.'s stroke) not sending the right signals to the thyroid to produce and release T3 and T4. He's having blood drawn and we'll get results in the next couple of days. His blood pressure is back up a little (140/90), so he will be returning to the doctor's office twice a week for the next few weeks to monitor this. It might be that he needs a medication change for this.
I'm starting to forget what J.J.'s voice sounded like before the stroke, which is both good and bad, I suppose. Good because I'm getting used to him sounding the way he does now. Bad because I don't want to forget. I may never hear it in person again; I'd like to at least retain it in my memory. But in any case, time marches on and J.J. is getting much more conversational again. He still has a few words that appear to be missing from his vocabulary that are taking longer to return (the most recent discovery is the word "kitchen"), but for the most part if he takes his time and doesn't rush he does just fine.
The CPAP is still a struggle for J.J. He's having lots of trouble getting used to it, but he's giving it a chance, which is all I can ask. If he still hasn't adjusted to it by next week's sleep study, he may be switched to wearing oxygen at night.
Everything else is going pretty well here. Kids are doing fine; Eli's birthday is Saturday so we're gearing up for the big day. Due to my company's big event on Saturday and J.J.'s sleep study next Friday night, I think it's going to be the weekend of May 8 before we have his sleepover, which is the birthday party he's requested this year. But my parents will be coming over Saturday to take him to Toys R Us to spend his birthday money, and we're having cupcakes Saturday evening, and honestly I think he'll be so busy he won't even notice.
That's about all the news that's fit to print. Now I must go check on the progress of dinner (Eli is assisting J.J. to put together a meatloaf) and prepare to make it an early night tonight!
Monday, April 20, 2009
Waste of time
So, the Voc. Rehab appointment this morning? They herded us into a room with 13 of our closest friends, read a handout to us word for word, then sent us back to the front desk where they handed us paperwork with individual assessment appointments already pre-set. The appointment was at 9:00, they didn't bring us back until 9:20, and I got back in my car at 9:38. And the office staff? Let's just say that Dr. Acula's customer service skills were top-notch in comparison. I've seen starving, rabid wolverine-pit bull mixes who were warmer and more nurturing. The caseworker appointment had better be a much different experience, that's all I have to say. And I now have an all-new appreciation for the ordeal many of the clients I work with everyday have faced as they try to navigate "the system".
In other news, over the last two days J.J. has assembled a whole room full of furniture for Eli (Eli is receiving new bedroom furniture, bedding, curtains, etc. for his birthday, which is Saturday. That's not all he's getting, but it's a large part) following some poorly written directions and confusing illustrations. But he's managed to bolt piece E into slot G using screw K or whatever, and it all looks pretty good. Obviously reading comprehension is improving here!
J.J.'s been a little down over the last few days, particularly because he really wants to return to work. However, anytime he has complex social interaction that requires him to speak a lot or has to do a lot of in-depth reading (like the furniture assembly instructions), it wipes him out. And when he gets tired, he has a lot more trouble communicating. So he had a meltdown last night about how he's going to manage to go back full time. My points were that 1) this is why he's still off work; 2) he's just barely two months out and has come a long way very quickly, so he can't judge where he'll be next week or next month or whenever his doctor clears him to go back based on where he is today; 3) he may need to ease back into work by doing part days or three days a week or something temporarily; and 4) with all the obstacles he's overcome, this shall pass as well. He's not really listening to me, but I tried.
I know this wasn't an in-depth update, but I'm still wiped from the cold (and the fact that we are swimming in new clients at work to the point that I am never, ever, ever caught up, even though I'm putting in a whole lot of hours) and I need to go to bed. I'll try to get more up tomorrow.
In other news, over the last two days J.J. has assembled a whole room full of furniture for Eli (Eli is receiving new bedroom furniture, bedding, curtains, etc. for his birthday, which is Saturday. That's not all he's getting, but it's a large part) following some poorly written directions and confusing illustrations. But he's managed to bolt piece E into slot G using screw K or whatever, and it all looks pretty good. Obviously reading comprehension is improving here!
J.J.'s been a little down over the last few days, particularly because he really wants to return to work. However, anytime he has complex social interaction that requires him to speak a lot or has to do a lot of in-depth reading (like the furniture assembly instructions), it wipes him out. And when he gets tired, he has a lot more trouble communicating. So he had a meltdown last night about how he's going to manage to go back full time. My points were that 1) this is why he's still off work; 2) he's just barely two months out and has come a long way very quickly, so he can't judge where he'll be next week or next month or whenever his doctor clears him to go back based on where he is today; 3) he may need to ease back into work by doing part days or three days a week or something temporarily; and 4) with all the obstacles he's overcome, this shall pass as well. He's not really listening to me, but I tried.
I know this wasn't an in-depth update, but I'm still wiped from the cold (and the fact that we are swimming in new clients at work to the point that I am never, ever, ever caught up, even though I'm putting in a whole lot of hours) and I need to go to bed. I'll try to get more up tomorrow.
No time to post
I'm sorry for my silence over the weekend. Between being sick and being incredibly busy, I just ran out of time. And I don't have time now either; I'm getting ready to run out the door to go with J.J. to his assessment at Vocational Rehab. I'll definitely post later today to let you know how it went!
Friday, April 17, 2009
Cold 1, Erin 0
I finally had to concede to the head cold today. I did actually go to work and got all settled in for our quarterly all staff meeting, then realized that there was no possible way I was going to make it through the meeting, much less the day. So I left, came home, dosed up and slept. Good times. I've GOT to stop getting sick soon. My life is definitely enough of a challenge to handle while I'm well.
I did get out of bed long enough to go to my second appointment with my therapist today (if you need to look back for reference about the last time I went, I think it was around 3/15 or so). I'm really in a fairly good mental place right now so I didn't need a whole lot of support, but I'm scheduled to see her in May anyway just in case. I'm not naive enough to think that everything will be smooth sailing all the time from here on out. Oh, and she did recommend that I stay on Zoloft for at least another month. Whatever. I've found out that with my insurance, it's actually free at certain pharmacies, so no problems here.
She did remark that I am amazingly resilient. I told her I wasn't aware there was another choice. She said she often gets people in similar situations who can't function, whose children are floundering and whose marriages are crumbling. I still don't think I'm anything special--I am just lucky enough to have a very strong and determined husband, a great support network and very few qualms about asking for help. And next to no social boundaries, so this blog helps immensely. It's odd to think that people I've never met know some of these things about me, but hey, writing is keeping me sane. So there you go.
J.J. just took Leah with him to pick up Eli from Tae Kwon Do, so I'm going to take advantage of the quiet to take a bath and dose up on more Nyquil (it's a bad sign that I've gone through almost a whole bottle this week!).
I did get out of bed long enough to go to my second appointment with my therapist today (if you need to look back for reference about the last time I went, I think it was around 3/15 or so). I'm really in a fairly good mental place right now so I didn't need a whole lot of support, but I'm scheduled to see her in May anyway just in case. I'm not naive enough to think that everything will be smooth sailing all the time from here on out. Oh, and she did recommend that I stay on Zoloft for at least another month. Whatever. I've found out that with my insurance, it's actually free at certain pharmacies, so no problems here.
She did remark that I am amazingly resilient. I told her I wasn't aware there was another choice. She said she often gets people in similar situations who can't function, whose children are floundering and whose marriages are crumbling. I still don't think I'm anything special--I am just lucky enough to have a very strong and determined husband, a great support network and very few qualms about asking for help. And next to no social boundaries, so this blog helps immensely. It's odd to think that people I've never met know some of these things about me, but hey, writing is keeping me sane. So there you go.
J.J. just took Leah with him to pick up Eli from Tae Kwon Do, so I'm going to take advantage of the quiet to take a bath and dose up on more Nyquil (it's a bad sign that I've gone through almost a whole bottle this week!).
Two Leah funnies
1. While she was sitting in my lap this morning, I was telling her how great she is. I had gotten through beautiful, smart, kind, sweet, and happy when she turned around and said, "I know, Mama. I'm just so Leah!" So apparently there's a new adjective in town.
2. She has a little scratch on her arm that she's had for a few days. She remarked that it's getting smaller. I told her that was because it was healing. She stopped in her tracks. "Does that mean that Jesus is healing me? My teacher said he can heal anything!" How cute is that?
My daughter never ceases to amaze me.
2. She has a little scratch on her arm that she's had for a few days. She remarked that it's getting smaller. I told her that was because it was healing. She stopped in her tracks. "Does that mean that Jesus is healing me? My teacher said he can heal anything!" How cute is that?
My daughter never ceases to amaze me.
Thursday, April 16, 2009
Why my husband is the best husband
It's now been two months since the stroke (as of yesterday at around 8:45 p.m.). That's not why I didn't post; that was a function of the fact that I worked 13.5 hours and still am struggling with a head cold. But instead of doing yet another repetitive update (everything's fine, although we're still both struggling to get used to J.J.'s CPAP), I thought I'd take this opportunity to convince everyone that I have the most awesomely incredible husband ever.
Since I'm a list maker, I'm going to do this list style. So in no particular order:
1. He loves his family more than anything else in this world.
2. He still has a close relationship with his mother.
2a. And he doesn't object to me having a close relationship with my mother (sometimes probably a little too close. My mother tends to forget sometimes that the umbilical cord was severed 30 years ago. Don't object, Mom, you know it's true).
3. He's done all the daycare drop offs and pickups since he got his license back, just so he can help to relieve my stress load.
4. His hugs make me instantly relax, and no matter where we are, I'm home when I'm in his arms.
5. His hair is out-of-control-crazy and it's still so cool on him.
6. He checks with me anytime he's going to spend more than $100 (outside of our normal recurring bills).
7. He has amazing taste in books and music.
8. He only sees the need to have one pair of shoes at a time but doesn't gripe at me about my collection (78 pairs and counting!)
9. I have a vivid memory of him leaping from the car one day when I was dropping him off at work (when he worked at the State Government Center) in the rain to help an old man with a cane get across the rain-slickened bricks. It was so Supermanish.
10. Even with no makeup, hair in a ponytail and sweats, I'm always beautiful when I'm with him.
11. He lets his daughter put lipgloss and clip-on earrings on him. It takes a true man for this.
12. He has the perfect mouth. His lips are full and red, his teeth are white and straight. It's like a movie star mouth. And when he smiles, it's one of the most beautiful things I've ever seen.
13. He is so incredibly smart. Brilliant. And even after the stroke, he may not be able to remember the words to express certain ideas, but they're still rattling around in that head. It was only two days after he came home from rehab that we had a conversation about Edward Liddy, G. Gordon Liddy, what G. Gordon is up to now and whether or not they're related. Go figure.
14. He's teaching his son to be a gentleman. Including the necessity to always, always put the toilet seat down.
15. When I was having trouble with my abcessed tooth and couldn't sleep, he sat up with me at night to make sure I was okay.
16. He loves my ambition and drive and has no problem taking a support role so I can get ahead.
17. His sense of humor is quirky, dry and offbeat, much like my own. And hasn't been stripped away by the stroke. I don't know if I wrote about this in the blog already, but the day he was moved from the ICU to the medical unit in the hospital, a nurse left a flashlight on his bedside table (I think she was using it to check his pupils, maybe?). I was talking on the phone and he was trying to get my attention. So he picked it up, said, "Psst!" and when I turned toward him, shined it in my eyes. It was just a little piece of his personality at a time when I really needed to see it.
18. He loves to collect rubber duckies and anything that has floating ducks (like those clear Lucite tumblers and soap dispensers and whatnot). It's just so unexpected it's cute.
19. He's sentimental. If you've ever wondered why he wears that silver chain, it's because I gave it and a St. Christopher medal to him for Christmas the first year we dated. The St. Christopher fell off a while ago, but he still wears that chain. Almost 12 years later.
20. He hates the taste of peppermint. It's one of my favorite flavors. He still kisses me even right after I've eaten it.
21. He bought me 1200 thread count sheets for Christmas. I am rather particular about my bedding, and it makes me so happy to know that he is willing to indulge me once in a while. Especially since he had 200 thread count (ick, ick!) sheets on his bed when we started dating. Like sandpaper, they were.
22. He knows what my order is from almost any restaurant in town and when I'm working from home, he used to run home on his lunch hour to drop off lunch unannounced, then he'd turn around and go right back to work.
23. He spent longer researching the most beneficial martial arts school for Eli to attend than I spent researching which college to attend.
24. When my back was bothering me last year, he took Leah to almost all of her gymnastics classes, just so I wouldn't have to suffer in silence on those metal bleachers.
25. He writes the most beautiful love letters.
26. He's an awesome cook and is now managing to make extremely healthy meals taste pretty darn good.
27. His socks are always in the middle of the floor. His glasses are always smudged. And he needs a shave five minutes after his last shave. He's not perfect, but he's even more lovable for his imperfections.
28. He's allergic to our cat, but he's figured out how to live with him because he knows how much I love Zeke.
29. My very least favorite household chore is cleaning the shower, so he does it for me most of the time.
30. I could go on forever, but I need to get some sleep tonight, so I'll make this the last one. Today a box arrived at my office via Fed Ex just as I was getting ready to leave. Inside was a pair of diamond baguette channel-set hoop earrings and a beautiful green quartz ring. Just because he loves me and wanted to make me happy. And he did. And he does, every single day.
And that's why I think my husband is the best husband. And if you don't agree (I understand some of you might be biased!) I think you can at least agree with me on this; that's why he's the best husband for me.
Since I'm a list maker, I'm going to do this list style. So in no particular order:
1. He loves his family more than anything else in this world.
2. He still has a close relationship with his mother.
2a. And he doesn't object to me having a close relationship with my mother (sometimes probably a little too close. My mother tends to forget sometimes that the umbilical cord was severed 30 years ago. Don't object, Mom, you know it's true).
3. He's done all the daycare drop offs and pickups since he got his license back, just so he can help to relieve my stress load.
4. His hugs make me instantly relax, and no matter where we are, I'm home when I'm in his arms.
5. His hair is out-of-control-crazy and it's still so cool on him.
6. He checks with me anytime he's going to spend more than $100 (outside of our normal recurring bills).
7. He has amazing taste in books and music.
8. He only sees the need to have one pair of shoes at a time but doesn't gripe at me about my collection (78 pairs and counting!)
9. I have a vivid memory of him leaping from the car one day when I was dropping him off at work (when he worked at the State Government Center) in the rain to help an old man with a cane get across the rain-slickened bricks. It was so Supermanish.
10. Even with no makeup, hair in a ponytail and sweats, I'm always beautiful when I'm with him.
11. He lets his daughter put lipgloss and clip-on earrings on him. It takes a true man for this.
12. He has the perfect mouth. His lips are full and red, his teeth are white and straight. It's like a movie star mouth. And when he smiles, it's one of the most beautiful things I've ever seen.
13. He is so incredibly smart. Brilliant. And even after the stroke, he may not be able to remember the words to express certain ideas, but they're still rattling around in that head. It was only two days after he came home from rehab that we had a conversation about Edward Liddy, G. Gordon Liddy, what G. Gordon is up to now and whether or not they're related. Go figure.
14. He's teaching his son to be a gentleman. Including the necessity to always, always put the toilet seat down.
15. When I was having trouble with my abcessed tooth and couldn't sleep, he sat up with me at night to make sure I was okay.
16. He loves my ambition and drive and has no problem taking a support role so I can get ahead.
17. His sense of humor is quirky, dry and offbeat, much like my own. And hasn't been stripped away by the stroke. I don't know if I wrote about this in the blog already, but the day he was moved from the ICU to the medical unit in the hospital, a nurse left a flashlight on his bedside table (I think she was using it to check his pupils, maybe?). I was talking on the phone and he was trying to get my attention. So he picked it up, said, "Psst!" and when I turned toward him, shined it in my eyes. It was just a little piece of his personality at a time when I really needed to see it.
18. He loves to collect rubber duckies and anything that has floating ducks (like those clear Lucite tumblers and soap dispensers and whatnot). It's just so unexpected it's cute.
19. He's sentimental. If you've ever wondered why he wears that silver chain, it's because I gave it and a St. Christopher medal to him for Christmas the first year we dated. The St. Christopher fell off a while ago, but he still wears that chain. Almost 12 years later.
20. He hates the taste of peppermint. It's one of my favorite flavors. He still kisses me even right after I've eaten it.
21. He bought me 1200 thread count sheets for Christmas. I am rather particular about my bedding, and it makes me so happy to know that he is willing to indulge me once in a while. Especially since he had 200 thread count (ick, ick!) sheets on his bed when we started dating. Like sandpaper, they were.
22. He knows what my order is from almost any restaurant in town and when I'm working from home, he used to run home on his lunch hour to drop off lunch unannounced, then he'd turn around and go right back to work.
23. He spent longer researching the most beneficial martial arts school for Eli to attend than I spent researching which college to attend.
24. When my back was bothering me last year, he took Leah to almost all of her gymnastics classes, just so I wouldn't have to suffer in silence on those metal bleachers.
25. He writes the most beautiful love letters.
26. He's an awesome cook and is now managing to make extremely healthy meals taste pretty darn good.
27. His socks are always in the middle of the floor. His glasses are always smudged. And he needs a shave five minutes after his last shave. He's not perfect, but he's even more lovable for his imperfections.
28. He's allergic to our cat, but he's figured out how to live with him because he knows how much I love Zeke.
29. My very least favorite household chore is cleaning the shower, so he does it for me most of the time.
30. I could go on forever, but I need to get some sleep tonight, so I'll make this the last one. Today a box arrived at my office via Fed Ex just as I was getting ready to leave. Inside was a pair of diamond baguette channel-set hoop earrings and a beautiful green quartz ring. Just because he loves me and wanted to make me happy. And he did. And he does, every single day.
And that's why I think my husband is the best husband. And if you don't agree (I understand some of you might be biased!) I think you can at least agree with me on this; that's why he's the best husband for me.
Tuesday, April 14, 2009
Miserable night
Boy, this CPAP stuff is going to take some getting used to. I was miserably tired (and doped up on Nyquil) when I went to bed last night, and I still tossed and turned all night because I couldn't stop worrying about how J.J. was doing on it. Not to mention that we've always had some of our best conversations while we're lying in bed waiting to fall asleep, and with the CPAP on he can't speak at all. And of course, he's not used to having something up his nose so he slept very little as well. Hopefully the adjustment period will be short.
So anyway, after very little sleep I'm at work again for what will be a very, very long day. J.J. has already done his part for the day to contribute to this by shrinking my favorite t-shirt in the wash this morning. It's going to be one of those days.
More this evening. Right now, I'm going to run out to pick up some lunch. If they're lucky, I'll even come back.
So anyway, after very little sleep I'm at work again for what will be a very, very long day. J.J. has already done his part for the day to contribute to this by shrinking my favorite t-shirt in the wash this morning. It's going to be one of those days.
More this evening. Right now, I'm going to run out to pick up some lunch. If they're lucky, I'll even come back.
Monday, April 13, 2009
Late post
I meant to post after J.J.'s appointment this morning, but the day has gotten away from me. So anyway, here's the rundown:
1. The appointment this morning yielded less than desirable results. J.J.'s sleep study (conducted on 2/27/09, remember) was abnormal. J.J. had about 8-12 episodes per hour in the lab of either apnea or hypoxia. While the doctor said this is actually considered pretty mild, with J.J.'s history of stroke, he recommended utilizing a CPAP machine. J.J. is to use this at least four hours each night until 5/1/09, when his sleep study will be repeated. The hope is that with the weight J.J. has lost he may not need the machine any longer at this time. So keep your fingers crossed, because it's taken every iota of persuasive power I possess to convince J.J. to use the machine until then.
2. Tonight was the first meeting of J.J.'s Aphasia Support Group. There are separate groups for the caregivers and the survivors. J.J. (as usual) was the youngest survivor, although there are a couple of people in the group who were not much older than J.J. when they had their strokes. I thought the caregivers group was really helpful. J.J. really disliked the survivors group, which he said was too much like speech therapy. I'm hoping he'll give it one more month to see if this was an anomaly. But I'll investigate other support groups as well just in case.
3. My work is insanely busy. It's after 9:30 and I still have probably another four hours worth of work to do tonight. I'm not sure how much longer I can keep up on this.
4. Our first night of babysitting passed uneventfully. The kids both love Karen, who is an elementary school teacher during the day and is just trying to sock away a little extra money. I went in to kiss Leah good night a few minutes ago, and she asked me if Karen could come over to play again tomorrow night! I think we found a good fit.
I think I hit all the relevant points of the day. I'll try to post more thoughtfully tomorrow; for now, I must get back to work!
1. The appointment this morning yielded less than desirable results. J.J.'s sleep study (conducted on 2/27/09, remember) was abnormal. J.J. had about 8-12 episodes per hour in the lab of either apnea or hypoxia. While the doctor said this is actually considered pretty mild, with J.J.'s history of stroke, he recommended utilizing a CPAP machine. J.J. is to use this at least four hours each night until 5/1/09, when his sleep study will be repeated. The hope is that with the weight J.J. has lost he may not need the machine any longer at this time. So keep your fingers crossed, because it's taken every iota of persuasive power I possess to convince J.J. to use the machine until then.
2. Tonight was the first meeting of J.J.'s Aphasia Support Group. There are separate groups for the caregivers and the survivors. J.J. (as usual) was the youngest survivor, although there are a couple of people in the group who were not much older than J.J. when they had their strokes. I thought the caregivers group was really helpful. J.J. really disliked the survivors group, which he said was too much like speech therapy. I'm hoping he'll give it one more month to see if this was an anomaly. But I'll investigate other support groups as well just in case.
3. My work is insanely busy. It's after 9:30 and I still have probably another four hours worth of work to do tonight. I'm not sure how much longer I can keep up on this.
4. Our first night of babysitting passed uneventfully. The kids both love Karen, who is an elementary school teacher during the day and is just trying to sock away a little extra money. I went in to kiss Leah good night a few minutes ago, and she asked me if Karen could come over to play again tomorrow night! I think we found a good fit.
I think I hit all the relevant points of the day. I'll try to post more thoughtfully tomorrow; for now, I must get back to work!
Sunday, April 12, 2009
Cleaning out email...
And came across this one from J.J. dated 10/24/07. Not sure I ever even saw this one before. But it made me smile:
I LOVE YOU!
Sitting here, working and thinking that I love you very much, and that I'm sorry things have been so busy. Looking forward to seeing you tonight and getting to hold you for a little while.You make me happy. You make me feel good. You make everything better. Much like thin mints, only without the nasty minty taste.:)
Love you much, and always.
JJ
I LOVE YOU!
Sitting here, working and thinking that I love you very much, and that I'm sorry things have been so busy. Looking forward to seeing you tonight and getting to hold you for a little while.You make me happy. You make me feel good. You make everything better. Much like thin mints, only without the nasty minty taste.:)
Love you much, and always.
JJ
Easter
And so we've come to the first holiday since J.J.'s stroke. I expected this to be hard to deal with. But it was a complete non-issue. First of all, it's hard to be sad while watching your children tear around the house hunting eggs. Secondly (and I can't believe I'm saying this already!), J.J. has made so much progress over the last week or so that it's really not that different than holidays we've spent together as a family in the past. Yes, his speech still has issues. Yes, his reading is slower than it used to be. Yes, his spelling is atrocious. But I'm really starting to believe that we're going to make it through this.
I had a discussion with a coworker a few days ago about his belief that "full recovery" after a stroke is a myth. From everything I've read, I share this opinion. J.J. is changed from the person he was eight weeks ago at this time. However, as I was telling J.J. a couple of days ago, I think in a few months he'll be functioning so well that anyone who didn't know him before the stroke won't know that he was impacted. The rest of us may notice differences (like his new willingness to use a list when going shopping, something he always scorned in the past). But already, the stroke is starting to momentarily lose its place as the defining feature of our lives.
Who'd have thought it was possible?
I must get back to doing some work and I need to wake up J.J. so he can go get started on Easter dinner (ham and all the traditional fixings). J.J.'s appointment with the sleep specialist is tomorrow at 9:15 a.m. I'll update after the appointment. Please keep your fingers crossed that this goes well; J.J. is terrified that they'll try to make him use a CPAP. In fact, he's making noises about skipping the appointment and I'm having to bully him into going. So any good thoughts you can spare would be appreciated!
I had a discussion with a coworker a few days ago about his belief that "full recovery" after a stroke is a myth. From everything I've read, I share this opinion. J.J. is changed from the person he was eight weeks ago at this time. However, as I was telling J.J. a couple of days ago, I think in a few months he'll be functioning so well that anyone who didn't know him before the stroke won't know that he was impacted. The rest of us may notice differences (like his new willingness to use a list when going shopping, something he always scorned in the past). But already, the stroke is starting to momentarily lose its place as the defining feature of our lives.
Who'd have thought it was possible?
I must get back to doing some work and I need to wake up J.J. so he can go get started on Easter dinner (ham and all the traditional fixings). J.J.'s appointment with the sleep specialist is tomorrow at 9:15 a.m. I'll update after the appointment. Please keep your fingers crossed that this goes well; J.J. is terrified that they'll try to make him use a CPAP. In fact, he's making noises about skipping the appointment and I'm having to bully him into going. So any good thoughts you can spare would be appreciated!
Saturday, April 11, 2009
I might love you, yeah, but I love me more...
Where to start? First of all, J.J. having his license back is so incredibly awesome I can't even put it into words. Yesterday morning I got to get dressed without turning my back so whatever kid was in the room with me wouldn't be traumatized, and I cranked the radio in my car so loud on the way into work that I totally missed a call from the INHP President (again, sorry about that Moira!). It was completely decadent and I have no idea how we made it through the 53 days that J.J. couldn't drive.
Even more important is what it did for J.J.'s confidence level. He looks so much more sure of himself, and I've even noticed a little bit of difference in his speech as a result. I know this went a long way toward making him feel like a normal person again and not an invalid.
In fact, he went to work yesterday just to walk around and show off to everyone. I've been offering to take him to work for a while, but he said he wanted to wait until he could drive himself there. He reports that everyone misses him and that this blog is getting quite a bit of readership (so hi there, RWA!). He said he was even able to help Kevin to work through a problem, even though Kevin had to help him find the words to state the fix a couple of times. Which explains why he's still off work. But he's getting closer.
Last night we drove to Louisville in the pouring rain to see our seventh Cowboy Mouth concert. As you may recall, we discovered Cowboy Mouth in the fall of 2007 at the Southern Comfort Music Experience and were instantly hooked. In addition to the fact that the music is incredible and is played by some of the most skilled musicians around, the concerts are like a big party/rave/revival. In between being brow-beat into putting my hands in the air, jumping around and being instructed to pretend like I was five years old on Christmas morning, I didn't have a whole lot of time to remember my problems. J.J. was noticably more quiet than he has been at other Cowboy Mouth shows we've attended (both because of his weakened vocal chord and because he has forgotten all the words to the songs), but we both had a great time. The title of this post is a line from one of the songs we heard last night, which almost made me cry in certain parts. The song is called "Take Me Back to New Orleans", and it's all about going home, whatever you define home to be. For me, it now speaks to my nostalgia for the past:
The Texas sun beats down upon me like the devil's smile
I'd rather be anywhere else than here
Was it a blinding lack of subtlety or just a lack of style
When responding to the ways and means of fear
Take me back to New Orleans
And drop me at my door
'Cause I might love you, yeah
But I love me more
My fingernails are bit until there's nothing left but skin
I'd rather be anyone else right now
The light that shone within my eyes is slowly growing dim
She told me where, told me when, but she didn't say how
Take me back to New Orleans
And don't call me anymore
'Cause I might love you, yeah
But I love me more
(She said)
How can I make this unhappen?
(I said)
You cannot make this unhappen
Choose before your choices fade away
(She said)
I could be home by tomorrow
If I could beg, steal or borrow
I said you're there, you might as well stay
The morning light arises through another crack in the glass
The lack of sleep has made me numb
But sometimes when she sleeps she'll turn and she'll whisper his name
That cake must taste great but I'll pass when you offer me some
Take me back to New Orleans
And drop me at my door
'Cause I might love you, yeah
But I love me more
Take me back to New Orleans
And don't call me anymore
'Cause I might love you, yeah
I might love you, yeah
I might love you, yeah
But I love me more
I love me more
I love me more
But I didn't cry. In fact, I haven't cried since Tuesday night. So things are looking up.
I just sent J.J. out to get lunch for me. I have lots to do today, and I seem to have acquired the cold that J.J. and both kids have (my immune system is totally shot from all the stress and the lack of sleep) so I'll be doing it in a fog. But it will be a good day. I'm spending it with the love of my life, with my first thought each morning and my last thought at night, with the person who knows me best (and still somehow loves me anyway)...
Even more important is what it did for J.J.'s confidence level. He looks so much more sure of himself, and I've even noticed a little bit of difference in his speech as a result. I know this went a long way toward making him feel like a normal person again and not an invalid.
In fact, he went to work yesterday just to walk around and show off to everyone. I've been offering to take him to work for a while, but he said he wanted to wait until he could drive himself there. He reports that everyone misses him and that this blog is getting quite a bit of readership (so hi there, RWA!). He said he was even able to help Kevin to work through a problem, even though Kevin had to help him find the words to state the fix a couple of times. Which explains why he's still off work. But he's getting closer.
Last night we drove to Louisville in the pouring rain to see our seventh Cowboy Mouth concert. As you may recall, we discovered Cowboy Mouth in the fall of 2007 at the Southern Comfort Music Experience and were instantly hooked. In addition to the fact that the music is incredible and is played by some of the most skilled musicians around, the concerts are like a big party/rave/revival. In between being brow-beat into putting my hands in the air, jumping around and being instructed to pretend like I was five years old on Christmas morning, I didn't have a whole lot of time to remember my problems. J.J. was noticably more quiet than he has been at other Cowboy Mouth shows we've attended (both because of his weakened vocal chord and because he has forgotten all the words to the songs), but we both had a great time. The title of this post is a line from one of the songs we heard last night, which almost made me cry in certain parts. The song is called "Take Me Back to New Orleans", and it's all about going home, whatever you define home to be. For me, it now speaks to my nostalgia for the past:
The Texas sun beats down upon me like the devil's smile
I'd rather be anywhere else than here
Was it a blinding lack of subtlety or just a lack of style
When responding to the ways and means of fear
Take me back to New Orleans
And drop me at my door
'Cause I might love you, yeah
But I love me more
My fingernails are bit until there's nothing left but skin
I'd rather be anyone else right now
The light that shone within my eyes is slowly growing dim
She told me where, told me when, but she didn't say how
Take me back to New Orleans
And don't call me anymore
'Cause I might love you, yeah
But I love me more
(She said)
How can I make this unhappen?
(I said)
You cannot make this unhappen
Choose before your choices fade away
(She said)
I could be home by tomorrow
If I could beg, steal or borrow
I said you're there, you might as well stay
The morning light arises through another crack in the glass
The lack of sleep has made me numb
But sometimes when she sleeps she'll turn and she'll whisper his name
That cake must taste great but I'll pass when you offer me some
Take me back to New Orleans
And drop me at my door
'Cause I might love you, yeah
But I love me more
Take me back to New Orleans
And don't call me anymore
'Cause I might love you, yeah
I might love you, yeah
I might love you, yeah
But I love me more
I love me more
I love me more
But I didn't cry. In fact, I haven't cried since Tuesday night. So things are looking up.
I just sent J.J. out to get lunch for me. I have lots to do today, and I seem to have acquired the cold that J.J. and both kids have (my immune system is totally shot from all the stress and the lack of sleep) so I'll be doing it in a fog. But it will be a good day. I'm spending it with the love of my life, with my first thought each morning and my last thought at night, with the person who knows me best (and still somehow loves me anyway)...
Friday, April 10, 2009
Your regularly scheduled blog entry
will return tomorrow. I have so much I want to say but work is absolutely, completely insane and I'm getting ready to leave to meet J.J. and drive to Louisville for a concert. Blogging is just NOT going to fit into today.
But tomorrow, I promise, it will!
But tomorrow, I promise, it will!
Thursday, April 9, 2009
Driving Mr. J.J.
J.J. is officially driving again! We got him down the the BMV at about 12:45 and he called me about 10 minutes ago to say that they decided to renew his license while he was there so he's waiting for it to be printed.
Life is about to get soooo much easier!
Life is about to get soooo much easier!
Phase Two Complete
And I've completed the second stage of Operation Last Ride. J.J. is sitting in my office, waiting for the third stage to commence.
And for the record, it was much easier to drive J.J.'s van once I figured out how to adjust the seat!
And for the record, it was much easier to drive J.J.'s van once I figured out how to adjust the seat!
Phase One Complete
Stage One of Operation Last Ride (because I'm hoping this will be the last J.J. driving-around I'll have to do for a while) is complete. After getting a talking-to yesterday evening by the day care director about how late I've been running in the mornings, I was ready to go by 6:45 today. However, J.J.'s van wouldn't start and had to be jumped off of my car. Then there was window scraping to do, because obviously J.J. had to have me there for moral support to get this accomplished (honestly, why couldn't he have done this instead of messing around on the computer while he was waiting for me to get ready?). But anyway, we got the kids to school at 7:25, then I dropped J.J. off at rehab. His van is parked out on the street in front of our building because the parking lot is a little tight and I didn't feel like trying to back this beast up. In a couple of hours, I'll go muscle it out again--driving this thing is like driving a tank!--to go pick J.J. up and bring him back here.
In six hours (give or take), this should all be over and we should have another fully licensed driver in the house again!
In six hours (give or take), this should all be over and we should have another fully licensed driver in the house again!
Wednesday, April 8, 2009
Okay, so the plan for tomorrow...
Keep up, this might get kind of confusing! :)
J.J. has speech therapy at RHI at 8:00 a.m. I'll drive his car tomorrow to drop the kids off at daycare, then I'll drop him off at RHI. I have an interview at INHP (hiring a temp) at 9:00, so I'll come over here to get ready for that. At 10ish, I'll go back over to RHI to pick J.J. up. I'll bring him back over to INHP with me and will attend my lunch meeting from 11:30-12:30 or so. At this point, I'll drive J.J. to the license branch. My friend/coworker Katrina will follow me in her car. When we get to the BMV, I'll leave J.J. with his car and will ride with Katrina back to the office. J.J. will pass his test and will go get the kids and schlep them to Tae Kwon Do. I'll catch a ride home with my friend/coworker Palak, who was coming out to my neck of the woods tomorrow evening anyway to get a pedicure. After we get our toes pretty, Palak will drop me at home at almost the same time J.J. and the kids return.
Chalk another one up to Team Erin and J.J. Oh, and I checked--this is the very last miracle in my hat.
J.J. has speech therapy at RHI at 8:00 a.m. I'll drive his car tomorrow to drop the kids off at daycare, then I'll drop him off at RHI. I have an interview at INHP (hiring a temp) at 9:00, so I'll come over here to get ready for that. At 10ish, I'll go back over to RHI to pick J.J. up. I'll bring him back over to INHP with me and will attend my lunch meeting from 11:30-12:30 or so. At this point, I'll drive J.J. to the license branch. My friend/coworker Katrina will follow me in her car. When we get to the BMV, I'll leave J.J. with his car and will ride with Katrina back to the office. J.J. will pass his test and will go get the kids and schlep them to Tae Kwon Do. I'll catch a ride home with my friend/coworker Palak, who was coming out to my neck of the woods tomorrow evening anyway to get a pedicure. After we get our toes pretty, Palak will drop me at home at almost the same time J.J. and the kids return.
Chalk another one up to Team Erin and J.J. Oh, and I checked--this is the very last miracle in my hat.
More proof
that I can't hold down a job and deal with all the stroke crap. Tomorrow J.J. can get into the BMV at 1:00. No more openings for at least another week. However, I have a lunch meeting from 11:30-1:00 and then a financial planning appointment at 2:00. And remember, I'm the onliest financial planner at INHP, so having someone else cover is not an option.
You know, I don't think I'm asking for much. Many people would have run away from home already. But if anything, ANYTHING AT ALL, could be easy, that would be frickin' awesome.
You know, I don't think I'm asking for much. Many people would have run away from home already. But if anything, ANYTHING AT ALL, could be easy, that would be frickin' awesome.
Or not
BMV can't see J.J. until tomorrow at 1:00, which means yet another day of rearranging my schedule. It's like the saga that never ends. But hopefully it will soon enough.
More from the waiting room
But now J.J.'s with me. Think we're waiting for the nurse practioner to sign off on the results of J.J.'s assessment, sounds like he passed, but it's not official so no celebrating yet.
You know, it's times like these when Twitter sounds like a really good idea.
You know, it's times like these when Twitter sounds like a really good idea.
Still in the waiting room
The Occupational Therapist just came by to say that they are getting ready to head out with the driving instructor and that J.J. did fine on the reaction times test and other skills they worked on in the lab.
Should know more in another 30 minutes or so.
Should know more in another 30 minutes or so.
From the waiting room
They just took J.J. back to begin the evaluation. They will be working with him for the next 90 minutes, then will take him out with the driving instructor. At around 11 they'll have me come back and we'll discuss the next steps. In the meantime, I'm sitting in the vending lounge attempting to study retirement planning for my certification exam (Chartered Retirement Planning Counselor, in case you were wondering). This is going to be a long couple of hours.
The Big Day
This is THE morning. At 9:00, we'll be going to the Neuro Rehab Center at RHI to start J.J.'s driving evaluation. Please, please, PLEASE be thinking good thoughts. If J.J. can drive again, it will make everything so much easier. Not to mention that it will go a long way toward making J.J. feel more independent.
Yesterday was another bad day in terms of my mental state. I finally sat down with J.J. after the kids were in bed and told him what I was thinking and what my fears were. He was able to help me calm down since for him, he doesn't have to worry if his cognitive abilities are intact. He knows. And our conversation really helped me--I know he's on his way back to us. He's already come so far. It's not been very long. It'll work out.
Anyway, I don't really have much other news except for the fact that J.J.'s still losing weight. He's at about 94 lbs. gone now. He was telling me yesterday that the seatbelts on the shuttle he's been riding back and forth to rehab are really easy for him to fasten now. And the clothes we bought for him right after he got out of rehab are starting to sag on him again. It's amazing.
I slept in a little more than I meant to this morning since I was up late last night, so I'd better get a move on. I'll definitely report in as soon as we get back from the driving evaluation!
Yesterday was another bad day in terms of my mental state. I finally sat down with J.J. after the kids were in bed and told him what I was thinking and what my fears were. He was able to help me calm down since for him, he doesn't have to worry if his cognitive abilities are intact. He knows. And our conversation really helped me--I know he's on his way back to us. He's already come so far. It's not been very long. It'll work out.
Anyway, I don't really have much other news except for the fact that J.J.'s still losing weight. He's at about 94 lbs. gone now. He was telling me yesterday that the seatbelts on the shuttle he's been riding back and forth to rehab are really easy for him to fasten now. And the clothes we bought for him right after he got out of rehab are starting to sag on him again. It's amazing.
I slept in a little more than I meant to this morning since I was up late last night, so I'd better get a move on. I'll definitely report in as soon as we get back from the driving evaluation!
Monday, April 6, 2009
April Showers
bring May Flowers. Or something. At least, that's what my friend Palak told me today. I told her that was just too cheesy and that I'd have to use it as the title of my blog entry today. And so, here it is.
Not much news to report today, unfortunately. That's the bad thing about all of this. It's just unrelenting, bone-numbing, spirit-crushing slow pace of recovery that eventually takes a toll. I'm asked at least ten times a day how J.J. is. The answer you'll receive depends on how much detail I want to go into, but really, how should I answer this question? Things are better than they were, but not as good as they used to be. I know we're lucky, I know we're blessed, etc. But I'm tired, okay? I'm tired, he's tired. So that's the real answer. It's hard to know what to believe when you have one set of professionals saying that J.J. will be back at work within the next month or so (the rehab crowd) but you have paperwork from another doctor (Dr. Acula) stating that J.J. may never work again.
I'm also constantly examining everything J.J. does for indications that his cognitive abilities are still fully intact. This morning, I got to day care and realized that Leah was only wearing a hooded sweatshirt jacket instead of a real coat, because J.J. already had her in the car when I got ready to leave. Now, J.J. is a man and isn't always terribly observant on matters like this, so is that all there is to it? Or is it a sign that his problem solving skills may not be where they used to be? Add to it the fact that each time J.J. slurs a word slightly or limps a little, I make him smile to be sure that both sides are even and I check his pupils to make sure they're equal and that he's not having another stroke. It's a great way to live. I feel like there's an ax over our heads all the time.
I know I've been posting some grim stuff lately, but honestly, I think I'm only just starting to fully process everything that's happened. So hang in there--there will be more positivity and light soon.
To add a little good news, I did buy Leah's Easter dress this evening. I tried it on her a little while ago and she looks stunning. And it's a 6! She's so incredibly tall. Eli's got a new button down shirt with cool rolled-up cuffs. Add his Dockers and he looks rocker-chic. He has an image to maintain, you know.
Tomorrow is drum lesson and 4-H day, so don't expect an update until late. But remember to start praying--in about 40 hours, J.J. should be back to driving!
Not much news to report today, unfortunately. That's the bad thing about all of this. It's just unrelenting, bone-numbing, spirit-crushing slow pace of recovery that eventually takes a toll. I'm asked at least ten times a day how J.J. is. The answer you'll receive depends on how much detail I want to go into, but really, how should I answer this question? Things are better than they were, but not as good as they used to be. I know we're lucky, I know we're blessed, etc. But I'm tired, okay? I'm tired, he's tired. So that's the real answer. It's hard to know what to believe when you have one set of professionals saying that J.J. will be back at work within the next month or so (the rehab crowd) but you have paperwork from another doctor (Dr. Acula) stating that J.J. may never work again.
I'm also constantly examining everything J.J. does for indications that his cognitive abilities are still fully intact. This morning, I got to day care and realized that Leah was only wearing a hooded sweatshirt jacket instead of a real coat, because J.J. already had her in the car when I got ready to leave. Now, J.J. is a man and isn't always terribly observant on matters like this, so is that all there is to it? Or is it a sign that his problem solving skills may not be where they used to be? Add to it the fact that each time J.J. slurs a word slightly or limps a little, I make him smile to be sure that both sides are even and I check his pupils to make sure they're equal and that he's not having another stroke. It's a great way to live. I feel like there's an ax over our heads all the time.
I know I've been posting some grim stuff lately, but honestly, I think I'm only just starting to fully process everything that's happened. So hang in there--there will be more positivity and light soon.
To add a little good news, I did buy Leah's Easter dress this evening. I tried it on her a little while ago and she looks stunning. And it's a 6! She's so incredibly tall. Eli's got a new button down shirt with cool rolled-up cuffs. Add his Dockers and he looks rocker-chic. He has an image to maintain, you know.
Tomorrow is drum lesson and 4-H day, so don't expect an update until late. But remember to start praying--in about 40 hours, J.J. should be back to driving!
Sunday, April 5, 2009
Sunday update
It's now been seven weeks. Seven. Amazing. This is the 49th day we've been living with the reality of a stroke. Someday it'll even probably sink in.
Anyway, today marks another first--the first time I got irritated and up in J.J.'s face since the stroke. I'm kind of a hot-head with a short fuse, even though I get over my grumpiness as quickly as it started. This was a familiar argument for us, one about the need for J.J. to do more around the house. Really, at this point, I'd just settle for him not messing it up from the cleaning I've done; he doesn't have to actually clean. But anyway, that was early this morning while we were getting ready for church.
The Palm Sunday church service was lovely, and I'm not even saying that just because it featured a performance by the Young Gospel Choir (Eli is a member). By the time we got out of church, I felt much better.
Anyway, I've spent most of the afternoon bouncing between watching old episodes of America's Next Top Model (I love this show for the cool photography!), cleaning and doing INHP work, although not as much of those last two as I'd like. I did make an outing to Target a while ago to get J.J.'s Plavix prescription filled. While I was there, I bought the stuff to put together the kids' Easter baskets. If I do say so myself, these are going to be really awesome Easter baskets. And somewhat functional--each kid is getting (aside from lots of toys!) a beach towel and a pair of pajamas. But very little candy--we're way more concerned about living a healthy lifestyle than we were last year.
We just finished working out as a family. J.J. and I did a Walk Away the Pounds DVD (3 Mile Power Walk), Eli ran on the treadmill for 20 minutes or so and Leah wandered around through all of it with her wrist weights on. J.J. is a machine. I was huffing and puffing and had to take a couple of breaks but he powered on through it. I'm so proud of my man :)
Time to get everyone started on the bath/bedtime routine. Have a great week!
Anyway, today marks another first--the first time I got irritated and up in J.J.'s face since the stroke. I'm kind of a hot-head with a short fuse, even though I get over my grumpiness as quickly as it started. This was a familiar argument for us, one about the need for J.J. to do more around the house. Really, at this point, I'd just settle for him not messing it up from the cleaning I've done; he doesn't have to actually clean. But anyway, that was early this morning while we were getting ready for church.
The Palm Sunday church service was lovely, and I'm not even saying that just because it featured a performance by the Young Gospel Choir (Eli is a member). By the time we got out of church, I felt much better.
Anyway, I've spent most of the afternoon bouncing between watching old episodes of America's Next Top Model (I love this show for the cool photography!), cleaning and doing INHP work, although not as much of those last two as I'd like. I did make an outing to Target a while ago to get J.J.'s Plavix prescription filled. While I was there, I bought the stuff to put together the kids' Easter baskets. If I do say so myself, these are going to be really awesome Easter baskets. And somewhat functional--each kid is getting (aside from lots of toys!) a beach towel and a pair of pajamas. But very little candy--we're way more concerned about living a healthy lifestyle than we were last year.
We just finished working out as a family. J.J. and I did a Walk Away the Pounds DVD (3 Mile Power Walk), Eli ran on the treadmill for 20 minutes or so and Leah wandered around through all of it with her wrist weights on. J.J. is a machine. I was huffing and puffing and had to take a couple of breaks but he powered on through it. I'm so proud of my man :)
Time to get everyone started on the bath/bedtime routine. Have a great week!
Yesterday's Ups and Downs
Since I didn't get a chance to post yesterday (between a work function, a Childrens Museum visit, lunch with friends, grocery shopping, etc., I didn't have a lot of time), I'll copy a piece of an email I exchanged with a friend last night (so Jim, if you're reading, you don't need to read this entry again!):
I’m getting ready to blog about this (maybe tomorrow, actually, because I just got the kids to bed and I’m kind of sleepy) but as far as venting goes…it’s been kind of a weird day on my end. J.J. has been like a rock through all of this, always smiling and shaking off any complaints. But he’s cried twice in the last 24 hours, the first times since the stroke. Once because he is irritated that this happened when he was doing everything the doctor said. The second time was this morning when we were in the car listening to a CD he’s heard a billion times or so. He was trying to sing along and just broke down, saying that it was like he’d never heard it before even though he knows it’s back there rattling around in his brain. But on the good news front, he was able to return to playing Guitar Hero World Tour with Eli and me earlier this evening. I know that’s minor in the grand scheme of things, but it’s something we like to do and it also shows his manual dexterity is coming back. So it’s kind of an emotional rollercoaster day.
So now that you're up to date, I'll move on to today's update...
I’m getting ready to blog about this (maybe tomorrow, actually, because I just got the kids to bed and I’m kind of sleepy) but as far as venting goes…it’s been kind of a weird day on my end. J.J. has been like a rock through all of this, always smiling and shaking off any complaints. But he’s cried twice in the last 24 hours, the first times since the stroke. Once because he is irritated that this happened when he was doing everything the doctor said. The second time was this morning when we were in the car listening to a CD he’s heard a billion times or so. He was trying to sing along and just broke down, saying that it was like he’d never heard it before even though he knows it’s back there rattling around in his brain. But on the good news front, he was able to return to playing Guitar Hero World Tour with Eli and me earlier this evening. I know that’s minor in the grand scheme of things, but it’s something we like to do and it also shows his manual dexterity is coming back. So it’s kind of an emotional rollercoaster day.
So now that you're up to date, I'll move on to today's update...
Friday, April 3, 2009
Back
After weeping my way through the morning and much of the afternoon, I finally said uncle at around 2:30, picked up the kids and came home. And about halfway between work and daycare I suddenly became convinced that I can handle everything again. Go figure.
But anyway, I'm feeling much, much better, thank goodness. See? I always bounce back.
So since I haven't really updated much for several days, here's all the news:
1. There was a cancellation and we got J.J.'s driving evaluation moved up to next Wednesday, April 8. This day is also my grandmother's 87th birthday, so it's obviously lucky! So please, cross all your crossables and send good thoughts our way. Having two adults to handle all of the errands and kid-running again would make things so much easier.
2. I got a call yesterday from the office of the doctor who read J.J.'s sleep study (conducted on 2/27) wanting a follow up appointment "as soon as possible". It's obviously extremely urgent, as we'll be seeing him on 4/13 at 9:00 a.m. Whatever.
3. I have completed the full cost-benefit analysis and have officially come to the conclusion that Walmart is the cheapest place for us to get J.J.'s medications refilled. Good to know, since we've already had them filled there twice already. But what can I say, I'm a researcher.
4. For any of you who read my mammoth stroke education post (http://cyacva.blogspot.com/2009/03/stroke-education.html), you'll be glad to know that J.J. has regained the word Pineapple. Saying it is no problem, spelling it is no problem. Weirdest thing ever. But I'll take it.
5. We got a letter from Vocational Rehab that J.J. has an appointment on April 20. We actually got this several days ago, but I don't think I've mentioned it yet. They should be able to help with any modifications that J.J. might need temporarily when he goes back to work. For instance, since J.J.'s speech comprehension is still so much better than his reading comprehension, they can set up equipment to "read" his emails and such to him until his reading catches back up.
6. I'm preparing to post an ad on Craigslist for a babysitter to watch the kids for an hour and a half twice a week while we go to water aerobics class (something J.J. wants to try to build up strength, and something we've decided will make a nice couple time). We've never left the kids (outside of a daycare format) with anyone who wasn't a relative or a friend, so this is a little anxiety-provoking, but it'll be fine, I'm sure.
7. J.J.'s speech is a little iffy today because a) he's been worried about me and b) he's been working so much on his writing this afternoon. He still gets tired very easily, which we've been told to expect. But he's still making progress.
8. My parents are getting ready to go on their very first cruise in May! They will be gone for two weeks. I'm thrilled for them that they are taking the time to get away, but have been a little concerned about the fact that my back-up child care system will be out of the country. What if J.J. were to have another stroke? Anyway, I'm working on putting together a contingency plan, which of course means that everything will be smooth sailing (no pun intended!). I can't wait to see Mom and Dad's vacation pics!
I think that's about it.
And with that, it's been a tiring day. I've taken some Benadryl (darn Indiana spring weather!) and will be going to bed shortly. It'll probably be a while before I actually go to sleep, but I have a great book waiting for me; and for once, it has nothing to do with strokes, neuroscience, brain plasticity, cardiac recovery or therapy of any kind!
But anyway, I'm feeling much, much better, thank goodness. See? I always bounce back.
So since I haven't really updated much for several days, here's all the news:
1. There was a cancellation and we got J.J.'s driving evaluation moved up to next Wednesday, April 8. This day is also my grandmother's 87th birthday, so it's obviously lucky! So please, cross all your crossables and send good thoughts our way. Having two adults to handle all of the errands and kid-running again would make things so much easier.
2. I got a call yesterday from the office of the doctor who read J.J.'s sleep study (conducted on 2/27) wanting a follow up appointment "as soon as possible". It's obviously extremely urgent, as we'll be seeing him on 4/13 at 9:00 a.m. Whatever.
3. I have completed the full cost-benefit analysis and have officially come to the conclusion that Walmart is the cheapest place for us to get J.J.'s medications refilled. Good to know, since we've already had them filled there twice already. But what can I say, I'm a researcher.
4. For any of you who read my mammoth stroke education post (http://cyacva.blogspot.com/2009/03/stroke-education.html), you'll be glad to know that J.J. has regained the word Pineapple. Saying it is no problem, spelling it is no problem. Weirdest thing ever. But I'll take it.
5. We got a letter from Vocational Rehab that J.J. has an appointment on April 20. We actually got this several days ago, but I don't think I've mentioned it yet. They should be able to help with any modifications that J.J. might need temporarily when he goes back to work. For instance, since J.J.'s speech comprehension is still so much better than his reading comprehension, they can set up equipment to "read" his emails and such to him until his reading catches back up.
6. I'm preparing to post an ad on Craigslist for a babysitter to watch the kids for an hour and a half twice a week while we go to water aerobics class (something J.J. wants to try to build up strength, and something we've decided will make a nice couple time). We've never left the kids (outside of a daycare format) with anyone who wasn't a relative or a friend, so this is a little anxiety-provoking, but it'll be fine, I'm sure.
7. J.J.'s speech is a little iffy today because a) he's been worried about me and b) he's been working so much on his writing this afternoon. He still gets tired very easily, which we've been told to expect. But he's still making progress.
8. My parents are getting ready to go on their very first cruise in May! They will be gone for two weeks. I'm thrilled for them that they are taking the time to get away, but have been a little concerned about the fact that my back-up child care system will be out of the country. What if J.J. were to have another stroke? Anyway, I'm working on putting together a contingency plan, which of course means that everything will be smooth sailing (no pun intended!). I can't wait to see Mom and Dad's vacation pics!
I think that's about it.
And with that, it's been a tiring day. I've taken some Benadryl (darn Indiana spring weather!) and will be going to bed shortly. It'll probably be a while before I actually go to sleep, but I have a great book waiting for me; and for once, it has nothing to do with strokes, neuroscience, brain plasticity, cardiac recovery or therapy of any kind!
Still
Gray day.
Gray mood.
I feel like I'm going to fall apart any time now.
Everyone keeps telling me that I need to let others do things for me. I've had offers to cook our meals, watch our kids, run errands for me, etc. The unfortunate thing is that most of the exhaustion I feel isn't physical. It's emotional, mental, spiritual. And no spa day, nap or afternoon at the movies is going to cure that. Short of having a lobotomy or a time machine, I don't know what would.
I love my family. I love my husband. I'm not going to run away from it all.
I'm just mourning the life, family and husband I used to have and wishing I had appreciated these things more while I had them.
Gray mood.
I feel like I'm going to fall apart any time now.
Everyone keeps telling me that I need to let others do things for me. I've had offers to cook our meals, watch our kids, run errands for me, etc. The unfortunate thing is that most of the exhaustion I feel isn't physical. It's emotional, mental, spiritual. And no spa day, nap or afternoon at the movies is going to cure that. Short of having a lobotomy or a time machine, I don't know what would.
I love my family. I love my husband. I'm not going to run away from it all.
I'm just mourning the life, family and husband I used to have and wishing I had appreciated these things more while I had them.
Thursday, April 2, 2009
One Year Ago
We were on our annual Spring Break road trip--last year we cruised all around Kentucky. No idea that we wouldn't be taking a trip this year. Instead, our whole lives are trippy.
Although I must say, I think J.J. looks quite a bit healthier now than he did one year ago.
Technology bites
I got a message a few days ago from our IT guy that I needed to clean out my work email (mostly my sent/deleted items mailboxes). Just started working on it this morning. Of course, there are all kinds of little messages from J.J. about mundane little everyday things, like that he needs to stop to pick up bread on the way home or that I need to stop by the bank to get cash for Eli's field trip, etc.
Even worse were the voicemails (we have unified messaging so I get these in my email too). That voice sounding so much smoother, louder and more confident than it does now, just checking in to see how my day was going and to tell me that he loves me.
But the very worst part was that right in the middle of all this, J.J. called to tell me that he picked up the mail and I had a package. Listening to him now, on the heels of listening to how he was, was just too much for me. I had to close my office door and I'm sitting here with tears running down my face.
When will this stop? I'm tired of crying. I want to be able to move on with life like everyone is saying I should, but I can't help remembering how awesome the past was. And I know that someday everything will be awesome again...but right now, this all just sucks. Bad.
Even worse were the voicemails (we have unified messaging so I get these in my email too). That voice sounding so much smoother, louder and more confident than it does now, just checking in to see how my day was going and to tell me that he loves me.
But the very worst part was that right in the middle of all this, J.J. called to tell me that he picked up the mail and I had a package. Listening to him now, on the heels of listening to how he was, was just too much for me. I had to close my office door and I'm sitting here with tears running down my face.
When will this stop? I'm tired of crying. I want to be able to move on with life like everyone is saying I should, but I can't help remembering how awesome the past was. And I know that someday everything will be awesome again...but right now, this all just sucks. Bad.
Lucky
Every so often I just have to step back and remember how incredible it is that J.J. is still alive and how lucky we are to have him around. It's easy to lose sight of this fact while dealing with all the changes we've had to make.
J.J.'s voice is different. It's softer and more hoarse and frustrates him to no end because he can't sing.
but...
He's still able to communicate. And his softer voice means that I need to slow down and focus completely on what he's saying, which means that I'm really hearing him and not barely registering the conversation in between a hundred other thoughts like I used to do.
We can't have the long, deep conversations about absolutely nothing that punctuated our first twelve years together.
but...
We can still hold hands in the car. He can still massage my neck after I've spent long hours working at the computer. I can still run my fingers through his hair and fall asleep with my head on his chest.
His smile is different.
but...
It's also more full of the enjoyment of being alive.
This has been a long week, and a disappointing one for J.J., since he was hoping to drive himself to speech therapy this morning instead of me dropping him off on my way to work and him riding the shuttle back home, which is what happened instead. But these next three weeks will fly by like the nearly seven (!) weeks which have preceded them and he'll be driving again soon.
I can't get too upset about this minor setback. In the grand scheme of things, it really doesn't matter. And who knows--maybe my stomach flu was God's way of telling us that J.J. needed a little more time before going to take this evaluation.
Everything will work out. I know it.
J.J.'s voice is different. It's softer and more hoarse and frustrates him to no end because he can't sing.
but...
He's still able to communicate. And his softer voice means that I need to slow down and focus completely on what he's saying, which means that I'm really hearing him and not barely registering the conversation in between a hundred other thoughts like I used to do.
We can't have the long, deep conversations about absolutely nothing that punctuated our first twelve years together.
but...
We can still hold hands in the car. He can still massage my neck after I've spent long hours working at the computer. I can still run my fingers through his hair and fall asleep with my head on his chest.
His smile is different.
but...
It's also more full of the enjoyment of being alive.
This has been a long week, and a disappointing one for J.J., since he was hoping to drive himself to speech therapy this morning instead of me dropping him off on my way to work and him riding the shuttle back home, which is what happened instead. But these next three weeks will fly by like the nearly seven (!) weeks which have preceded them and he'll be driving again soon.
I can't get too upset about this minor setback. In the grand scheme of things, it really doesn't matter. And who knows--maybe my stomach flu was God's way of telling us that J.J. needed a little more time before going to take this evaluation.
Everything will work out. I know it.
Wednesday, April 1, 2009
April Fools!
More proof that the universe has a sense of humor--I woke up at 3:30 this morning with that stomach flu Eli had over the weekend. So in addition to how special that was, I couldn't get J.J. to his driving evaluation. And the next opening they have is on April 22.
And with that, I'm going back to bed.
And with that, I'm going back to bed.
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