Miracle

J.J. is under consideration for a research study out of Northwestern in Chicago that will, among other things, provide him with more speech therapy. He'll receive a hour and a half of therapy a day using computer based technology for eight weeks, as well as in-person sessions twice a week during this time.

To prove that J.J. meets the diagnostic criteria, we had to get his medical records. We got them in last night but I worked 13 hours yesterday and didn't get the chance to review them until a few minutes ago.

His CT scan report from the day after the stroke is alarming. J.J.'s entire speech center was decimated by the stroke (I won't go into the language they used, but that's what it means).

He shouldn't be able to speak.

But he does. And he speaks better every day. Further back in the records, there's even notes from doctors stating that his speech belies the damage shown on the scans. Obviously, they have no more idea why J.J. has had such a positive outcome than we do.

I have two things to say about this: 1) Brain plasticity is a wonderful thing. From what we've been told, one of the reasons J.J. has been able to recover so much of his speech so quickly is because he studied so many different languages, which has caused more neural pathways to develop that in most people's brains. When J.J. starts this research study we'll know more (the first thing he'll do is a functional MRI) but the theory is that the area directly opposite the area that was destroyed (i.e., in his right hemisphere instead of the dead left hemisphere area) is picking up the slack. Anyway, it's amazing. 2) I may not know how this happened, but I know who does. I see this as just more evidence that God is in control here. My husband is a miracle of medical science.

To interpret the rest of the report, I need to figure out what "effacement of the left temporal horn" is. I have an idea (I actually think this is just more about where the speech areas were impacted, actually), but don't have the time to do the digging right now.

With that, I'm off to INHP's Community Breakfast...

Alright, alright!

Some friends on Facebook talked me into taking a picture of the hair. So here it is...

This was before J.J. washed it. Now that it's clean, it looks significantly better, I'm happy to report. So maybe it's time to put these scissors down, huh? :)

So...

The haircut pics are going to have to wait. My husband looks like some 20 year old goth/punk kid. All he needs is the trench coat, the combat boots and the t-shirt with some role playing game logo on it and he'd look like he did when we first started dating.

I think once it's properly washed and has some styling product in it, it will resemble something that belongs on the head of a man who's crowding 34. Otherwise, it's back to the salon. At least this cut was free, since J.J. donated a foot of hair to Locks of Love...

The haircut

is occurring right now :( I'm going to miss all of J.J.'s long hair.

You'd better bet there will be pictures later!

Stroker is an effective weapon!

So I got J.J. to call Citibank to plead our case. 10 minutes later, the late fee's waived, my APR is back down to a reasonable level and my credit report is once again safe. I know it's vaugely manipulative, but I'll take what I can get.

(Oh, and in case you're wondering, Stroker is my new nickname for J.J. Mostly when he's doing something particularly strokey)

So, I got suckered into working late on Thursday night at work, which essentially means I have tonight and tomorrow night to clean the house, do the laundry, mow the lawn, pack us and both kids, finish assembling Eli's 4-H poster, etc., etc. We have to be at the airport at about 3:00 a.m. on Saturday, so Friday night's pretty shot. Oh, and did I mention that it's VBS week at church? So the kids don't even get home until 9:00 each night this week? AND that the grant proposal that typically takes us a month or so to get put together came out last Friday and is due this Friday?

It's all part of the universe making sure I'm good and ready for that vacation by the time I get to it :)

Short Term Memory Loss

I'm so upset right now I can barely stand it. J.J. has been stubbornly holding on to paying the few bills he's always been in charge of paying. One is my Citibank card that I use for work expenses (and which, recently, I used to cover my root canal). So there's not a huge balance on it, and the payment's only like $20 per month. Well, due to the short term memory loss, J.J. forgot to pay it this month, and now I've incurred late fees, a ding on my formerly pristine credit report and my interest rate has been jacked up to 30%!!! I know I should have been monitoring J.J., but damn. I can't keep all the balls in the air all the time.

Worst of all is the cascade effect this will have as other creditors find out what's happened. I'm anticipating a movement toward high interest rates all around.

And I'm a financial planner, mind you. Don't you want to come work with me now????

I'm so ticked at J.J., both for not admitting he needed help and for not taking care of himself in the first place.

Stroke. It's the gift that keeps on giving.

18 Weeks

In an hour and a half or so, J.J. will be 18 weeks out from his stroke. It's getting far enough away that I don't always remember the weekly anniversaries. Wonder when I'll start getting through the 15th of each month without thinking about it as well?

This week has been kind of tumultuous. J.J. had his neuropsychologist appointment on Thursday, where he was put through eight hours of strenuous cognitive testing to determine what deficits he has that will need to be compensated for to get him back to work. We won't have results for a couple of weeks. But the process really messed up J.J.'s speech Thursday and Friday. It was getting better yesterday, but he's been overdoing it on the knee and his speech is bad again today. In fact, I've had to tell him to stop talking a couple of times today because he wasn't making any sense and because it was such slow going that I wasn't getting anything done. And because, God help me, but everytime he starts doing the "ummmm....uhhhhhh....mmmmm..." thing while he's trying to think of a word, I want to throw myself off the proverbial cliff.

It's really strange to be in this position. It's been long enough and J.J. is doing better enough that I think most of the world has forgotten about us. But the fight is far from finished, and right now, I think we're both about out of knots to tie in the rope to help us hold on. We leave for our vacation in less than six days, so hopefully that will rejuvenate us enough to fight another day.

Oh, and did I mention that Leah came down with Hand, Foot and Mouth disease and Eli had what I believe was his first migraine on Friday night? Fun times.

No one has ever needed a vacation more than we do, that's for sure.

Leah's First Pedicure

I've got so much to do this weekend, but so far I've spent it bonding with my children. This morning I took Eli to the Indianapolis Museum of Art on a photography excursion. We shot for about an hour and a half all over the grounds, by which time we were exhausted and hot. We stopped at Dairy Queen on the way home for a little refreshment.

This afternoon, I took Leah to get her very first pedicure, something I've been dreaming of doing with her ever since I found out she was a girl! She loved it--she says the best part of the experience is putting her feet in the water, although the massage chair scored pretty high as well. Here's a few pictures of the experience...

What you can buy for $5

Every morning since the construction at 465 and Washington St. caused me to change my route into work (so, what, three months or so now?) I've passed the same homeless man at the same corner, very near the Childrens Museum. And every day like the rural-raised girl who was never exposed to this sort of thing growing up that I am, I politely look the other way or suddenly become engrossed in my cell phone display or whatever else I can do to avoid making eye contact.

Today, though, I happened to look up as he walked by my car while I was stopped at the light, and I was struck by the depth of the hopelessness in his eyes. He had the same appearance as a dog who has been kicked too many times; watchful, wary, suspicious, downtrodden.

I very rarely carry cash, but I happened to have a $5 bill in my wallet this morning. So I rolled down the window and handed it to him. And he smiled, a little of the tightness around his eyes easing. Then the light changed, and I continued on toward my office and he walked back toward his corner to prepare for the next group of commuters to pull up.

I know all the social arguments why I shouldn't have given him the money. I know that I might be contributing to his drug or alcohol problem, etc.

But I didn't really do it for him. I did it for me. How many times do you get to see raw gratitude on someone's face and know that your gesture was appreciated? How many days to you get to go on your way knowing that someone's day was a little easier because of you?

I think $5 was a bargain.

Sigh

It's been a really decent week here. J.J. is recovering really well from his knee surgery and is speaking better and better all the time. I keep encouraging him to go back in to RWA to show people how well he's doing. He keeps saying he will, but hasn't yet. Think he's hoping that the next time he walks in, he'll be coming back to work. And it's not going to be long now. Our family doctor originally told us 8/24, but I wouldn't be surprised if she sends him back before that. I definitely don't think (barring any other mishaps) that it will be any later.

The kids are doing great. We've decided on a new school for Eli for next year. It's a charter school focusing on math and science and he's really pumped about going there. He earned his dark blue belt in taekwondo over the weekend and should make black belt within the next few months. He's accompanying me to my engagement photo shoot tomorrow since he's showing so much interest in photography. He's also been taking Foods through 4-H and is becoming quite the proficient baker. Leah is getting ready to start swimming lessons again and is just generally being the best, cutest, smartest, most independent little girl I could ever want.

So things were going pretty well.

Then I found out that my best friend will be moving in a month to Wisconsin. Won't get into the details (it's not really my story to tell) but it just bites so much. I know it's best for her, but I can't help but wonder about my support system. She's been my backup plan if anything else goes wrong with J.J., like if I need someone to sit with the kids in the middle of the night while I run to the hospital. Now I guess I need a plan B.

Sigh.

Dora the Explorer Live

You know how you know you're a Mommy? You stay home sick because your allergies are so bad your nose is dripping down your face, your head is pounding and your eyes won't stop watering, but you manage to drag yourself to a different state to see Dora the Explorer Live with her number one fan...

Pardon the image quality, I took these with my crappy point-and-shoot ($88 at Walmart three years ago; you can read between the lines to interpret exactly what an advanced machine this is).

The five hours of sleep I got last night are completely worth it when I look at that face. She may not remember in ten years, but I'll remember what a magical night it was for her.

I feel so privileged that God chose me to raise these amazing kids.

Eli's School Picture

I just realized I hadn't posted this yet. Isn't he handsome?

Has it been a week already?

I'm sorry about my infrequent posts, life seems to be getting in the way...

1. J.J.'s come a long way in his recovery from his knee surgery this week and is getting around pretty well. His speech is also almost all the way back to where it was prior to the surgery, thank goodness. He had a follow up appointment with the surgeon's office (the actual surgeon was on vacation) on Tuesday and they are amazed at how well it's doing. No physical therapy, but J.J. is supposed to exercise it to strengthen it.

2. The weight loss continues. I think he's down 111 lbs. since the stroke now. Whatever it is, it's some incredible number and you would think losing it this fast would make him look a little ill, but he looks fabulous. He looks healthier than he has for years.

3. He's going to cut all of his hair off!!!! I'm distressed about this, which is odd because I was never that thrilled with the concept of him having it long to begin with. I've grown to love it and will miss it. He'll probably grow it back out once the med change has kicked in and it stops falling out. Oh joy, I get to go through all the awkward growing out stages again. Sigh.

4. J.J. was supposed to start seeing the vocal specialist today, but yesterday we realized it had been written up to code as speech therapy. J.J. has already maxed out his speech therapy benefit, so I called my good friend Brandon over at Anthem (apparently our account is assigned to him, because when I enter my account info I always get routed to him) to see what to do. Apparently the doctor and/or speech therapist have to file a precert asking for more therapy since this is a different diagnosis than the original condition. So the ENT's office is working on this.

5. It struck me the other day that we really need a Rolodex to keep up with all the cards for J.J.'s health team. He has our family doctor, a neurologist (Dr. Acula), a couple of cardiologists, an orthopedist, an ENT, a dermatologist, a podiatrist, a neuropsychologist, a stroke case manager, a physical therapy team, two different speech therapists, a Vocational Rehab counselor...is that it? I know I'm missing someone. But in any case, that's a whole stinkin' lot of people. No wonder I'm so busy filling out paperwork and manning the calls. It's getting better though, because...

6. J.J. has started filling out most of his own paperwork again now. I've created a couple of lists he can print out for common inquiries (his prescriptions, his physicians, etc.) and he can do all of his demographics and family medical history himself again. It's been really nice to surrender this back to him.

7. We're starting to come up with some systems that work for us to combat J.J.'s memory issues. Our first line of defense is a plethora of post-its. J.J. doesn't go anywhere without a list now, whether it's a grocery list or a list of questions to ask the doctor. We've also purchased the largest planner you've ever seen to record all of our family appointments and any other notes that need to be written in a centralized place (like reminders of what paperwork needs to go to whom, etc.) I think I'm going to invest in a microcassette recorder for J.J. as well, so at the end of each doctor's appointment we can get them to sum up the critical information and recommendations to listen to again. Our family doctor (God love her, she's been so awesome during all of this) has been writing lists of key points and sending them home with J.J., but I think this will make the whole process easier.

Okay, now that all the stroke stuff is out of the way, other stuff that's going on around here:

Monday, Leah had her first sleepover. Her friend Connor came over to spend the night (Connor's brother Gabe, who is Eli's best friend, was also here). They were so cute together. Connor is so considerate of Leah; at one point she wanted a drink, so he got up and got it for her. Nova, you're raising a true little gentleman there.

Of course, it thunderstormed overnight that night, so I was up most of the night in case Connor got scared and needed me. He didn't make a peep of course, but I got about 3 hours of sleep. Actually, that's about what I'm averaging most nights now. It's ridiculous.

Anyway, Gabe has been spending a lot of time here with Eli this summer, which is working out pretty well. With the notable exception of Wednesday afternoon, when we attended J.J.'s stroke support group at the rehab hospital. Oh, don't get me wrong; the boys were excellent. The topic for the lecture part of the group, though, was intimacy after stroke. It was pretty tastefully done, from the little I heard, but I still gathered the boys up and took them out to walk the halls for a while; when we got back, the discussion had moved from physical to emotional intimacy. I actually wouldn't have been too worried about Eli hearing the discussion (we've always discussed a variety of topics with our kids in age-appropriate terms, so he probably wouldn't have even blinked at anything he might have heard), but I'm not Gabe's mother and didn't want to make that decision for her. So there you go.

Eli's been having lots of fun this summer with his various activities, especially his 4-H cooking class. Every week they make a different kind of baked good. This week was brownies--which, in case you didn't know, I love more than anything on this earth, with the probable exception of my husband and children. It was heavenly to come home to a pan of brownies Wednesday night, especially since I had a crummy afternoon at work. A coworker made a stupid joke about J.J. and his work status that left my jaw hanging open. I confronted him about it, he apologized and we've moved on, but it still made me feel a little crappy.

I did FINALLY book our plane tickets this morning. We'll be flying out super early on Saturday, June 27 (like, we have to be at the airport at 3:30 a.m. early). We get to Seattle at 10:30 and the boat leaves at 4:00 p.m. Don't worry, I bought trip insurance on every component of this trip, so we should be okay. Our return flight leaves Seattle at 11:15 p.m. on Saturday, July 4 and gets us home around 10:30 a.m. on Sunday. We connect in Phoenix on the way there and in Atlanta on the way back. I am bummed that we're flying US Airways there (blargh!), but I'm happy about the connection in Phoenix because I've spent quite a bit of time there for business recently and I know Sky Harbor like the back of my hand. When you're incoherent from lack of sleep, it's nice to know the place you're stumbling around! Anyway, now that the tickets are booked, hopefully I can relax a little bit and be excited about the trip!

J.J. has both kids right now at tae kwon do. Eli's testing for his dark blue belt, which is one away from black belt (although he has to also test for his stripes from here on out, so it'll be a little while before he gets the black belt). He feels pretty confident about it, so hopefully in a couple more hours we'll have a different belt on the rack in Eli's room.

Okay, I think that's enough rambling for tonight. I'll try to write again soon, but I make no promises--life is pretty hectic around here!

Irony

Dr. Acula the neurologist is out on short term disability. We didn't find out until we had already gone to his office that he won't be back until July. And part of me kind of wondered how his doctor filled out his paperwork. Was it as soul crushing for him to read over as it was for us?

So the neurologist visit is rescheduled to July 15. But J.J. did meet with his new cardiologist today. I'm already liking this guy, since he admitted that J.J.'s previous cardiologist was a complete moron. Anyway, he tweaked J.J.'s medication a little more (mostly dosages and switching from regular to extended release on one medication) and wants to see him back in a couple of weeks once the meds have kicked in to run some more tests. We're starting with an EKG and a doppler and progressing from there as needed. Oh, and J.J. has lost 7 lbs. since Monday. Freak. It took me over a year to lose 100 lbs., so I'm incredibly jealous. Not jealous enough to have a stroke and explore the wonders of this diet plan for myself, though...

I did book the cruise, by the way. We depart Seattle on June 27. Well, assuming we get there. I still haven't booked airfare. I'm gambling that prices may come down a little as we get closer. I'm actually even toying with the idea of renting a car and driving to Denver to catch the flight from there, since it would save us about $300 and Denver's really only about a 12 hour drive. Not sure I'm that ambitious, though...

Now that you know everything I know, I'm going to bed. When I wake up, it will be 22 days until our trip!

Vacation

J.J. and I have decided to take a real vacation this year, the first one since we got married, actually. Yes, I know he's on disability and isn't making his full pay, but we've got savings set aside and I absolutely need a break! We have identified a spectacular deal on a 7 night Alaskan cruise, which has been near the top of our "must do" list for a very long time. It even leaves on July 3, which cuts one day off the time I'd have to miss from work! The problem? Airfare to/from Seattle (the departure/arrival port) is almost as much as the entire cruise! Does anyone know of any discount sites or have any recommendations on how we can do this more inexpensively? I'm tempted to just do it anyway, but it really is more than I feel comfortable with...

Sigh. I'll let you know what we figure out.

My life

So this is kind of a selfish post, but I need to reason this out, and where better than in public for anyone who happens by to see?

I'm a believer in the power of visualization, not so much in that creepy "The Secret" kind of way (apologies to any of you who are followers, but I can't get past a couple of key points) but mostly because I think you need to be able to picture what you want to figure out how to get there. I totally feel that if I can imagine it, I should be able to have it. Nobody's stopping me except me.

So if that's all it takes, what do I want from my life?

Of course, the first and most important thing for me is that my family is well and together. I am raising two incredible human beings who make me proud to be their mother and who will make this world a better place. I want to continue to instill in them the confidence that comes from knowing that you are loved and that your parents love each other. I'm going to encourage their dreams and to teach them the importance of doing what you know is right, spending your time in ways that make you happy and remembering to be thankful for what you have. I know I can't protect my children from all the bad in this world, nor would I want to. They will need to endure struggles so they can discover who they are and can identify that they have strength beyond what they ever imagined. But I hope that they will find special partners to accompany them on their life journeys, to share their burdens and keep them laughing, and mostly importantly to GIVE ME GRANDCHILDREN! (I've listened to my parents enough to know that that's where the payoff in this parenting business occurs!)

My husband is going to continue to be the man I'm in love with, and we are going to continue to have adventures together and to discover new things about each other every day and to be so cute together that we inspire spontaneous puking episodes from many we encounter and envy from the rest. Now that we know what's wrong with J.J., there's no reason he can't live to be an old man hanging out in a rocker on the front porch with me (notice that I didn't reference myself getting old--J.J. is almost three years older, so I'll continue to be young even as he gets old! :))

I'm also going to have made peace with this body and will have started treating it much better, in the way a creation of God's hands deserves to be maintained. I'll exercise regularly and eat right and sleep more than only sporadically. I'll also control my stress better, because in the long run, what do I really have to be stressed about?

I'm going to be doing work that I love. I love what I do right now, but I'm not entirely sure that it's my life's purpose. I'm going to figure out what that purpose is and I'm going to pursue it. I do know that it will be in the helping professions, most likely in nonprofit like what I do now (it's really hard to return to Corporate America after you've felt what life on this side is like). Will it be at INHP? Don't know. Will it be with our new nonprofit organization? Right now I think it's a good possibility, but I still am not sure. I do know that I have the knowledge and skills to be successful in whatever I choose to do, so I'm going to enjoy the journey to that point.

I'm going to return to school. Some of you know (and heck, I may have blogged about this, can't remember and don't care to look it up) that I was accepted into a Ph.D. program and have tenatively scheduled to begin in December. Now that I've had more time to think about it, I'm not entirely sure I'm in the right program--luckily I've got time to figure this out now and not when I'm deep into the program! Whatever the field, I know I'll someday earn my doctoral degree. It's kind of a life goal to prove to myself that I can.

I could go on for hours describing the life I'm going to have (and can I just say that this is amazingly empowering and liberating? Try it for yourself, you won't be sorry!) but the rest is merely details. I will have enough money to be comfortable and to be able to enjoy life without having so much that I lose sight of the value of each dollar. I will have many opportunities to assist others. I will encounter those who are meant to teach me lessons in life, and I will never stop learning. I will not try to be what I'm not. I will not focus on my weaknesses but will instead choose to build upon my strengths. I will walk the walk and talk the talk. And at the end of my life, I will know I've done my best.

It's been an amazing life already. It's going to keep being an amazing life. Not in spite of this stroke--because of it.

I've talked about all the ways my life has changed due to the stroke. In my weakest moments, I dwell on the negative impacts. I won't lie, there are many. But to be perfectly honest, there are almost as many positive impacts.

And now if you'll excuse me, I'm going to go kiss my sleeping husband and enjoy the rest of this night.

Back

Sorry about the extended absence from the blog. I was following the old adage of saying nothing if you can't say anything nice.

The way things stand right now, J.J. is healing nicely from his knee surgery and is able to walk around more each day. The problem is that his speech is horrible since the surgery (well, it's been pretty bad since 2/15/09, but you get the drift...). I'd say he's probably been set back to about where he was this time last month. And even though to my rational mind, this makes sense when I stop to think about it (when he's focusing a lot of energy on physical recovery, be it when he's sick, tired or stressed or whatever, his speech gets much worse--it stands to reason this would impact him too), I really just want to scream. Didn't we do this once already, and weren't those some of the darkest days of my life? I used to console J.J. when he was having a bad day by telling him that we'd never have to live that day again. Apparently I was wrong.

The other bad thing about all of this is that it put me back into the role I was in right after the stroke--I've had to do all the cleaning, all the yard work, all the cooking (or mostly lack thereof; our diets have been pretty bad this week) and all the caring for children and for J.J., all on my own. Unfortunately I'm not as fresh as I was when I first started on this adventure, so it's been pretty draining. Today is the first day in a week that I haven't felt like just burying my head under the covers and trying to forget it all.

Anyway, here's the weekly recap and preview of what's to come:

1. J.J. was supposed to have his neuropsych assessment last Thursday, but he was in so much pain he was barely coherent, so we called it off. He's rescheduled for the END OF JULY. Sigh. But they do have us on the list to fill in for any cancellations they might have, so hopefully he'll get in sooner.

2. Friday was J.J.'s appointment with the ENT (Ear Nose Throat doctor--I believe the proper name is otolaryngology or something like that). His right vocal chord is not paralyzed, just weakened. He's going to be starting specialized physical therapy in the next couple of weeks specifically targeting that vocal chord. Or he could just yell at me and the kids. Whatever works.

3. Yesterday J.J. did his weekly blood pressure/weight check at our family doctor's office. His blood pressure was 118/78 and he's lost another 5 lbs.! I won't reveal his weight on this blog, since I'd die of embarassment if he revealed mine, but this brings him down below a major threshold mark he was trying to reach. He's the incredible shrinking man.

4. Tomorrow J.J. is scheduled to see his new cardiologist (remember, this is the most highly recommended cardiologist I could find in Indianapolis, even if he does take us out of the Hendricks Regional system and into St. Vincent's system). I'm crossing my fingers that this guy will take a more aggressive approach and will do some more tests to see what exactly is going on in there.

5. Also tomorrow, J.J. is scheduled to reunite with our old friend Dr. Acula (the neurologist, for our newer readers). He's progressed a lot since the last time Dr. Acula saw him, but darn it, I wish the good doctor could have seen him the way he was a little over a week ago.

6. We discovered the culprit on J.J.'s hair loss! It was a medication all along. Apparently it's his ACE inhibitor (lisinopril), so our family doctor is trying to figure out a drug in the same class that we might be able to try, while he still has some hair left.

I think that's all the news fit to print. As you can see, J.J.'s busy, especially since Eli is now out of school and spending the summer with his dad instead of going to day care (we have to keep Leah in because her full-time preschool spot might not be available in the fall if we take her out now, not to mention Eli waits much more patiently at doctor's offices than Leah does!) Eli and J.J. had a bonding day today over Eli's 4-H cookie workshop, and they brought home a pan of cookies to boot! What more can you ask for?