A little talk

I had a little talk with Ellie yesterday. I didn't plan it, but rather took advantage of the moment. She was sort of excluding Linda, so I asked her some questions about Linda being sick. It's hard to tell what answers are really true from Ellie, because she often tells you what she thinks you want to hear.

I don't know what kids her age think about being sick. She sort of expressed being afraid of Linda, and I asked her if she was afraid that doing things with Linda might make Ellie sick or something. I don't know if her answer was a yes or a no.

So I just told her that she didn't have to be afraid of Mom, that what made Mom sick wasn't something that you can catch or that we should worry about happening again. I explained that Linda did not choose to be sick. It wasn't something that was Linda's fault. And her medicine is helping her to get better.

I don't know if it made much difference, but Ellie's attitude seems to be softening since we talked.

A little sick

Having Ellie gone for a bit more than a week has been somewhat informative. She picks up new patterns around new people and expresses different patterns of her own. When she was at her grandparents house, she described her mom as "a little sick." She said it when she got home too.

I asked her, "Why do you say Mom is a little sick? Is it because she has to use canes to walk?" Ellie said yes. Obviously, in Ellie's mind, Linda isn't really sick because she is home, but she isn't really right either. So that's how Ellie describes it, a little sick.

Ellie doesn't really like that her mom is a little sick. In Linda's words, "She doesn't like me." Ellie definitely does prefer me now, which is to be expected since I do most things with her. But I have noticed, especially since Ellie got home this week, that she specifically doesn't like Linda to be included in things. Ellie wants me to play outside, but she would prefer for Linda to stay in the house. She doesn't like Linda to come into her room (although she often doesn't want anyone in her room in the morning), and so on.

It's a little bit hard on moms, losing their status as the favorite. That's not to say that there aren't some real advantages to being second favorite (I know, it was my status for a long time). But Linda doesn't feel like second favorite even. Linda understands it, but it makes her sad too.

What a workout

Linda did weights again on Friday. It was quite a workout. We had planned to go out for dinner afterward to sort of celebrate our last day free from Ellie. Linda was so tired that she made me take her home and call for carry-out instead. That was fun too.

Like anyone after a good workout, Linda has been a bit stiff. She was particularly stiff yesterday, but she tells me that today she is normal again. For me, the day after the day after a workout is usually my really stiff day, so I thought she might be hobbling around today. However, she had a good night's sleep and is walking very well today.

Ellie is back, with her typical mix of cuteness, affection, and general vexatiousness. Last night she was a bit trying, but this morning she has been quite good, especially for her.

Here's a cute Ellie thing. I promised to read a story to her before bed last night, but she was so tired when bedtime came that I just laid her down instead. At 4:30am, she was crying. When I went to check on her, she said, "You didn't pick me up and read me a story!" She seemed genuinely upset about it (as opposed to just manipulative) so I grabbed a copy of Goodnight Gorilla and we had a short story. It ends with everyone going to sleep, and Ellie was happy to do the same after that.

Do you miss us?

They say the best way to get readers to leave your blog is to post less frequently. I am narcissistic enough to enjoy my readership, but I have posted less anyway. Why? Because Ellie is staying with her grandparents.

Since Ellie is away, Linda and I have really tried to enjoy our time. Alas, dear reader, that means you get ignored. You'll survive, but I'm sorry if you've missed us.

The truth is, I've also had meetings and missed most of Linda's therapies this week. So I can't update you with lots. I do know that she tried walking with a single cane on Monday and was pleased with how she did.

Yesterday, I'm told that they went to the weight room for her PT session. The big goal is to further reduce Linda's tone (involuntary muscle tightness) which will happen as she gets stronger. She told me that she really enjoyed the weights. It was something different, and something that feels normal, like everyone healthy. She did fall getting off one of the machines, which scared the PT. As usual, Linda's pride was hurt more than her body. Fortunately she landed on her behind which has a bruise on it now. In one way, Linda was very proud of her fall. She fought off the tears that inevitably follow and beat them.

Yesterday, Linda called Mary on the phone and had a mostly successful conversation with her. That was the first time Linda has talked to anyone other than me on the phone. She called her mother this morning and I think it went a little less well, but not bad. Definitely something to be excited about.

We're trying to remember to do Linda's oral stim at home more faithfully. This is an exercise where she touches different places in her mouth with frozen cotton swabs. The idea is to wake up the nerves and muscles she needs for talking. She always does it in therapy but forgets at home. We finally have a system that I think will work. I put a note by the coffee stuff. If we make coffee at home, then she has to do the stim. She gets the coffee as a reward of course.

I dug up my septic lines in the yard since I thought they were broken. We had been having water back up to the house. Alas, they weren't broken, so I paid to dig them up for nothing. However, I know precisely where the overflow cap is located. I don't know if I wasn't told about it when I bought the house or if I didn't pay attention. I could have removed that for free and saved myself a lot of headache.

Oh well. Call it tuition. I just purchased a day class in septic technologies. It doesn't smell the greatest, but it really was pretty interesting.

Good and evil

We were watching The Lord of the Rings last night when I realized something. I don't feel like my life is some epic battle between good and evil any more.

Insurance companies exempted from that sentiment of course.

Glorious nap

For the terribly curious, we never got to karate this weekend. Linda was sleepy and took a nap instead. She was much cheerier after that!

Go Dogs

We went to the Truman football game today. It's nice that there is handicap parking right close--that really makes things simpler.

A football game may not sound like much, but consider that she has to navigate to a seat somewhere, and she has to sit for a long time without a back. I helped her walk to her seat. We were slow, but it went fine. Sitting was pretty good, too. Trunk control has been a strength of Linda's since way back in her recovery. Linda did eventually get tired, so we left early. It looks like the Dogs are going to get creamed anyway.

It is nice that we are gradually getting back to many of the activities that we did before. Soon we can expect to go to an entire game. Eventually she'll need less help getting to her seat. It should just get better and better.

Speaking of activities that we used to do, maybe tomorrow we'll try working on karate. We won't be able to do much (at all), and we won't be able to do it for long (5 minutes would be a true success). But we can start. I mentioned it to the PT yesterday, and, amazingly, she encouraged us to try it since it was an activity we used to do before. If we do, I'll let you know how it goes.

What shall I drive?

Today Linda said, "Maybe I should buy a PT Cruiser." That is to say, it's going to take a lot of PT to get her to driving, so maybe that is the car she is destined for. Her first choice is a Bug, but the Cruiser has its cool factor too.

Speaking of cars. She's ready to sell her 89 Mustang. She isn't going to be driving it for a while.

Fond of Fred

Here's a personal tid-bit about Linda. Yes, I'm up late. I can't sleep, so I am telling her secrets to the world. I tease her still about having a crush on Fred (her old PT), although she isn't as hopeless as she used to be.

She uses the name "Fred" now to describe other people. If someone takes delight in teasing or tormenting another, particularly to prod them do more than they thought they could, Linda might say about that person, "Who'd have thought they would have been a Fred?"

If I do something that challenges her balance and makes her work hard, she'll smile and say, "Stop that, Fred." It's the smile that really gives her away. It might seem like some kind of criticism, but it's not.

On the road again

We attended the Mid Missouri Stroke Survivors' meeting today in Columbia. On the drive, we listened to a Harry Potter book on tape (number five). It's tradition now, and it keeps me awake.

As usual, we got to see all of the therapists and many of the nurses. They were glad to see Linda, as they always are. Linda was especially pleased that Fred complimented her improved posture, since her current therapist is very diligent about asking her to work on that.

The subject of the meeting was the auto-ambulator, which is this large computerized kind of exo-robot that moves your legs. Linda used it once when she was a patient, but she thought it was kind of overrated. She thought that a better use of time was to walk more.

We talked about it today, and decided that a machine like the auto-ambulator would be of much more benefit at her current stage of recovery. She had really just used it a bit too soon. She needed more strength and crude balance development then. Now, when she is working on more subtle fluid movements, there is more point to it. It could take her fluidly through the movements she wants to develop and help her learn the "feel" of them again.

I don't know if we'll go anywhere with the idea of trying it again. Linda would be willing to give it a go as an outpatient if her therapist and physician thought it was a good idea. It would mean traveling to Columbia which is kind of a burden.

That book's not done

Apparently I misunderstood Linda about the completed state of her book. She informed me today that it still has 7 chapters left. Then at dinner I believe she told me that she thought of another chapter topic, so there may actually be 8 left. I'm not sure why I thought it was finished. It just goes to show that I don't always understand her despite all of the practice I have listening to her speech.

Inadvertent, my mutt

Our attorney got a letter from the insurance company's attorney admitting that Linda's speech therapy had been incorrectly terminated due to an "inadvertent miscommunication" with the caseworker. When I read this aloud to Linda, she sarcastically said, "Yeah, my mutt." If you don't understand why she would say such a thing, let me refer you to Best speech ever for a quick tutorial on Linda-speak.

Empty nest

Ellie went to visit her grandparents today. It's so relaxing not having to keep a 3-year-old entertained all of the time.

Hard but good day

Linda did a lot of pitch work in speech therapy today. They did all kinds of exercises, where she attempted to vary her voice up and down while she and the therapist viewed the result on computer. After it was over, I asked her how it was. She said, "Grueling." But she enjoyed it.

Tonight she made dinner, and not just macaroni and cheese. She made chicken and noodles, with mashed potatoes. We've learned before about chicken, so I skinned it before I went to work today. I also did the potato mashing when I got home. She did all of the rest, however, so it counts as a pretty big success.

It is definitely the closest Linda has come to preparing all of a non-trivial meal. I think she was very pleased, although her knees hurt from the long period standing.

Now for the real work

Linda told me tonight that she may have finished the draft of the book she is writing about her experience. I have to say, I have really enjoyed the recent chapters she has handed me.

I suspect that the real work starts now. Some of the first chapters she gave me seemed a bit rough, so I expect when she assembles it all and starts reading, she'll do a lot of rewriting. There's nothing like putting a project all together to make you realize how imperfectly things fit.

Less PT soon

Linda's PT told her that soon she may be ready to drop back to 2 sessions per week. Linda was very pleased to learn this, because it validates in a way the continued progress she has been making (and perceiving) recently. I was in a meeting, so I didn't see her therapy, but Linda tells me it was both good and really exhausting.

Sorry there haven't been many updates lately. Sometimes your life is really just routine. In a way that's a good thing--nothing to report is really something to report.

Damn those tails

Linda quote of the day: "Boy, tucking your shirt in is a pain, take it from me."

Dilemma over deceit

This dilemma occurred to me while pondering various conversations with insurance company representatives. I've already shared that in one conversation a representative viciously spat out, "You can get a prescription for anything."

OK, so you can get a prescription for anything.

Now here's the dilemma. According to the insurance company, you can't trust a doctor to tell you what is medically necessary. They'll break the bank. No problem right? They're balanced by the insurance company.

Unfortunately the insurance company has been telling me that Linda's speech therapy is not medically necessary as far back as June 29th. They later re-evaluated that and decided that gosh they were mistaken, but the re-evaluation effectively said, "OK. It was necessary then, but now it isn't." And they won't pre-authorize anything.

According to every professional in the field that I talk to, Linda's speech therapy is medically necessary. It's a no-brainer. So I keep sending her, and I tell the insurance company I want them to think about it again (haven't heard anything).

Fine. But it isn't always going to be a no-brainer, and eventually it isn't going to be medically necessary. So here's the dilemma. It's clear that you can't get a truthful answer from the insurance company or their experts. Yet doctors will sometimes prescribe things that aren't necessary. If you can't trust anyone, how am I to decide when we've crossed the line from necessary to unnecessary?

I'm not looking for answers. So far the doctors and therapists have been a lot more honest than the insurance company. No piece of information I get from the insurance is actually useful. For example, I just got the pre-authorization certification for a bunch of Linda's in-patient therapy in March and April. It was dated September 3. Glad I didn't need that little piece of paper to make an important decision.

I just ponder what I would say about the situation in front of a judge. After all, if it comes to fighting, that's whose going to have to decide what was appropriate. My attorney asks me what I have in writing. Nothing in writing says they won't pay for something. It turns out that they never say they won't pay for something--smart, that. They simply say what they will pre-authorize (although even there, the fine print points out that pre-authorization isn't a guarantee of payment). They tell me certain things on the phone, but everything appears to be an attempt to bully me into withdrawing Linda from (needed) treatment.

They are just now starting to pay for Linda's June therapy. I have no idea how long it will be until we are actually talking about payment for the not-pre-authorized therapies she is doing right now.

Best speech ever

Today may have been Linda's best speech therapy session ever. By that, I mean her speech was the best I have heard it yet.

The major problem in terms of understanding Linda's speech has for some time been hypernasality. Basically, that means she loses air through her nose when she doesn't mean to. The effect is that percussive consonants are replaced with nasal ones. B and P sound like M. D and T and to some extent S and Z all sound like N. With practice, I've learned to recognize subtle differences in the way Linda actually says all of them, but many people have problems still.

Today, Linda's consonants were very good. Her Bs and Ps were all appropriately percussive. Her Ts and her Ds were excellent. She did the best hard G sound I've heard since the stroke. All in all it was a very impressive session.

I complimented her on it tonight. I don't think she really had much impression about how well it went. Just as an experiment, I pulled out some lists of hard words that I constructed specifically for her. I call them my "magic lists." Magic list #1 has 29 different words that at one point in her recovery would all have been indistinguishable from the word "nine." In the past, I've had her read words at random from the list and tried to identify them by sound. It's a pretty hard exercise, by design. Tonight we made almost no errors.

Great other therapies

Don't think her other therapies are going poorly because I go on about speech. PT went especially well today. Linda did the stairs (which she rarely does in therapy) and needed only the rail and minimal support of her other hand to do them well. She walked on a balance beam for the first time since the stroke, with help. It was challenging, but seemed to go well also.

All together, it was a therapy day you couldn't really complain about.

The Truman speech clinic

We had our first session at the Truman speech clinic today. It went very well. Linda's student therapist is Sarah, and the two of them seemed to fit well right away. Most of the session I watched from behind the one-way mirror which will be the general rule for me. That's fine. I'll probably need to work on grading and such during that time anyway.

Linda had another small first today. Today was the first time that she got into the car "normally." By normal I mean that she put one foot in, sat down, and put the second foot in. Up to this point, she always had to sit down first and then pivot around. She said the regular way is harder, but she intends to keep doing it anyway.

Speaking of the car. I have cleaned the garage sufficiently that I can park my car in it again. Yay.

Free software or die

I had the funniest dream last night. I dreamed I was in some kind of mortal contest, something like Highlander,where I had to fight to the death with a bunch of other people. Only, it wasn't martial skill that made you successful. Your blows would only defeat an opponent by force of personality.

The key to succeeding was to get them to accede to some opinion of yours. Near the end, my opponent and I had both lost our swords and were dueling with canes (we each had one of Linda's red canes). Since I could think of nothing I was more resolute about, I decided to win my opponent over with the argument of free software. I knew that I would never budge.

So I am hitting my opponent with a stick and shouting examples about why free software is a superior philosophy and defending it against his rebuttals. I never finished the dream, but he was weakening by the end.

Back to the beginning

I have been encouraged on occasion to write some kind of summary for people finding this site for the first time. Instead, I pulled out my handwritten notes from the journal I kept at the hospital and wrote up the first day, which I have published on the blog under the date February 7, 2004. You can read the post if you like, at The fateful day.

Playing pig

Linda asked me tonight how to make pig snorting sounds. She grew up on a pig farm, so I said, "You never made pig sounds?" Maybe proper young girls don't do that. Well, I tried to explain it, not an easy task (but probably easier than it would have been before I sat through countless speech therapy sessions). I have encouraged her to do that sound because you have to work your soft palate to do it.

You should have seen her eyes light up when she did it somehow. I love that look. It's so childlike and innocent. She's lying in bed right now trying to be able to do pig noises consistently. She's pretty dedicated, so I think she'll get it.

She told me that she had another first tonight. Tonight was the first time she was able to take her shirt off by crossing her arms and lifting it over her head. I think it was a bit of a struggle, but you have to start somewhere.

Don the devious dad

Ellie has learned some time ago that she can pretty much get me to read a story whenever she asks even if it is after her bedtime. I know she does it to stay up late, but I think it is better to have her asking to read books than to worry about bedtimes.

Reading has consequently become something of a bedtime ritual, so when I started warming her up to the idea of bed tonight ("You only have 15 minutes...") she asked me to read stories. I picked 3 books out that are favorites of mine, Mrs. Mooley, All the Places to Love, and Green Eggs and Ham.

When we finished, I took her back to her room. I asked her, "Do you want to stay up a little longer?" She said yes of course, so I picked up a boardbook, Time for Bed, that we have been reading a lot lately and said, "If you want to stay up, take this in to Mom and ask her to read it to you."

I don't know if Linda said no, or if Ellie didn't understand her, but she came back right away. I told her, "Crawl on Mom's lap and say, 'Please read this book.'"

That's how I got Linda to read to Ellie tonight. I was surprised by how much difficulty she had, although she is much improved from the last time I head her read aloud. Ellie is such a little speech therapist. At one point, she stopped Linda and said, "Say 'goose.'"

Near the end, Linda couldn't turn the pages with her fingers, so Ellie said, "Here, let me." And she turned the last few pages. It was one of those scenes that in a movie would make you cry.

New sensations

Linda reported again today that she is having more improved sensation in her right hand. She described it as being able to feel the blood flowing again in her hand and compared it to having a sleeping limb reawaken. She said, "It feels sort of hot and cold at the same time." She did say her hand is still short of feeling normal, but every improvement is welcome.

Back up your data

You should sit down and think about what data matters to you and make a copy. Here's some data that mattered to me. I had two voice mails on my office system in Linda's "old voice." I have been keeping them to record with the telephone tape unit that I bought to document the insurance company's lies. I intended to digitize them and archive them for Ellie in case Linda's recovered voice isn't normal. I want her to realize that her mom was upbeat and fun and just like everyone else once.

Truman voice mails older than 6 months old are cleared from the system and there are no backups. I was consequently disappointed this afternoon when I learned this. Never trust your data to the care of other people.

I keep my grades on the computer. I back them up every 15 minutes (when there are updates) to a server in Texas. I'm not kidding.

Feeling good

Linda had late therapy today and it went really well. The speech therapists backed off a bit. They had been working her really hard and she was feeling a bit "pushed" by it. Her PT session went very well. They did leg lifts and balance exercises before finishing off with a lap around the track. Linda said the lap was one thing too many, but she was very pleased with how much her balance has improved since the last time she did the same exercises.

Now for something completely different

In other news, my headache that had been appearing every evening for about 2 weeks has finally gone away. I thought it was allergies (i.e. sinus headaches) since that is a common pattern for them. I think now it was either eye strain or not eating enough.

In any event, I started wearing my glasses more around the house, especially for watching television. I also started making sure that I snack a bit more. Unfortunately, I made both changes at the same time, so as any scientist can tell you I have no idea which was actually the variable that counted. Yes, I have realized that it could have been both.

I'm sure it wasn't a lack of caffeine that was the culprit. I made certain not to be deficient in that essential food.

Walk of fame

Linda did her walking. She was nervous. Somehow, I forgot to mention that there would be students evaluating her gait. That is to say, I asked her if she would be comfortable working in front of students, and she said, "Yes," so I thought it was just assumed. As people are sometimes wont to say, "My bad."

Linda was disappointed with her walking. She said it was like walking for her physical therapist. I asked her which made her more nervous, a room full of students or her therapist. She said it was a tie. Unfortunately, nervousness kicks in her tone, making it difficult to be relaxed and fluid. I thought she did fine.

After the walking, we answered some questions. I answered most of the questions, since Linda was immediately shy, a failing I rarely struggle with. I did have her answer some things, but the students had difficulty understanding over the background noise of the ventilation system, so I was translating everything anyway.

All in all, I thought it went very well. I'm looking forward to seeing how the digital analysis looks.

Taking our show on the road

Linda will be walking on video for a human performance class today. They will digitize her and analyze the gait. I'll fill you in more tonight.

Home alone

Linda told me that she enjoyed having her morning to herself. I asked her if she cried, and she told me that she did a little but that she was able to stop on her own. That's good.

Thinking of her

When I'm walking around campus, I have these thoughts of terrible things happening to Linda. I wonder, what if she fell and hit her head? What if she cut herself or got a nosebleed and is gushing blood that won't stop? What if she spilled boiling water on herself making macaroni and cheese? What if she broke her arm and can't get up?

It's not that I didn't worry about irrational things sometimes before the stroke too. Linda has a profound cardiac history. She also liked to go for walks (yes, completely unrelated, but stay with me). Sometimes she would be out for a walk when I arrived home expecting her to be around. I couldn't help but check the house to make sure she wasn't dead from a heart attack somewhere. Morbid, I know. But you've never called the ambulance for her when she was having chest pain. I have.

Taking the day off

I woke up at 6:45am this morning to the sound of Linda crying in the bathroom. That sound will bring you from total sleep to total alertness pretty fast, but when I asked, she said she hadn't hurt herself. She was just crying.

She was dreading therapy this afternoon. I had had her therapies switched to the afternoons so we could go together and not need assistance. Unfortunately that meant she was looking forward to a whole day of dreading therapy. I'm not sure about the rescheduling now. We'll have to see.

Finally, I just called and cancelled her appointments for today. The insurance company will be delighted. They didn't want to pay for them anyway. We'll find something else to do this time.