Cya CVA!

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Has it really been a week already?


erobertson

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(Originally posted June 12, 2009)

 

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!

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