Tuesday, June 29, 2004
Five minutes after my last post, I ran over one of Ellie's "little kitties" when I left to pick her up from day care. I'm glad she didn't have to see that.
The insurance company informed us today that they will no longer pay for Linda's speech therapy. Apparently we don't even have an outpatient speech therapy benefit, and they feel they have been generous in paying for what they have already. Linda's speech is described as 75% accurate and that is "good enough." They expect her to be able to do the rest on her own.
Linda and I are a bit disappointed to learn this.
Some good news: Linda's double vision is improving some. We went to the eye doctor, and she is going to try a thinner prism on her glasses this week. I expect it to take a bit of adjusting to, and then she'll be that much closer to normal. Right now, her prism is 6 diopters, which means it moves the image of things that are 1m away by 6cm. Her new prism will be 5 diopters.
Monday, June 28, 2004
In a routine
We seem to be getting into a routine (although a somewhat irregular one). Therapies tends to fall at different times on different days, but they always arrange it so she can do them back to back. She is only doing PT three times a week, but they are scheduling longer sessions when they meet, so they can work more in depth on skills.
I've started working out some when Linda is in therapy. I don't do it every day, because Linda still likes to have an interpreter with her. But it is nice to get a chance to exercise again. It is one of the things I really missed at Rusk.
Outside of therapy, our activities vary some. We go to the coffee shop a lot, which many of you already know. We enjoy that a lot, but we are cutting back a bit, so as to spend something less than our entire income in that one shop! Otherwise, just running errands or doing a bit of work is enough to keep us pretty busy. We get a fair bit of time to read during the day, and Ellie keeps our evenings intense.
In almost all of it now, Linda is walking with her walker. Her walking at home (where she is most relaxed) is particularly good. Give her an audience though and she'll lose her balance from time to time, particularly at turns and transitions between different surfaces, much to the detriment of her pride.
Sunday, June 27, 2004
I went to the doctor on Friday for my ear infection. He said my ears and sinuses looked pretty inflamed and prescribed an antibiotic. My ears still felt a bit "off" yesterday, but they seem to be more normal today.
Linda went around the house with a fly swatter yesterday. Since Ellie leaves the door open when she plays with her "little kitties," we have a lot of flies. Linda isn't really accurate, but it's a great exercise, so I am not going to deter her.
Linda went around the house with a fly swatter yesterday. Since Ellie leaves the door open when she plays with her "little kitties," we have a lot of flies. Linda isn't really accurate, but it's a great exercise, so I am not going to deter her.
Friday, June 25, 2004
I woke up this morning to the soft gurgling sound of ... a cat pooping on the carpet in the next room. I don't get it. It's been outside 23 hours and 45 minutes. Linda let it in for 15 minutes to gorge on cat food. What could possibly make my carpet so attractive? Maybe I'm just not a natural cat lover, but that isn't adorable. For those of you who worry, I didn't kill it. I didn't even injure it in brutal, painful ways.
I think I have an ear infection. Why do these things always happen just before a weekend.
Just wanted to let you know that my life isn't always perfect.
Thursday, June 24, 2004
The walking experiment
Linda planned on walking everywhere (out) today, so we left the wheelchair home when we went out. It went pretty well, except between the two of us we somehow forgot her ankle supports. She never needs them right away, but after she gets fatigued they become important. We managed, with me blocking her right ankle so it wouldn't turn over.
In general, her walking is getting better and faster. She knows that one of her next tasks is going to be using more balance in her activities as opposed to raw strength. To get ready, she is trying to incorporate as much as she can now. She uses more balance in her walking and tries to lean less on the walker, and she seems to be better for it. She is also trying to do that with sitting and standing although I think that is a bit harder for her.
She has set a goal for walking "almost everywhere" in a week or so, including at home.
Fine motor control
This morning, Linda picked up her fingernail scissors (her preferred method of grooming nails) and went to work. When I asked her how it went, and she said "A little short." Not bad, if you asked me.
Monday, June 21, 2004
Laughing, crying, and moaning
You know Linda cries (a lot) when she is only slightly sad. She also laughs when things aren't really funny.
If you feed her something really tasty, she will moan. Everything tastes better now, so she does it fairly often. Unlike the crying, it doesn't bother her. I think it feels freeing to be more vocally expressive. She actually described it as one of the good things to come out of the stroke.
It's interesting that she does it when watching movies too, because it gives hints about the scenes that she finds moving. It isn't always the parts you would expect.
Signs of improvement
I know a lot of you read to see what the new improvements are. How about this? Today, we had chicken for supper (and green beans and mashed potatoes). Linda cut up her own meal. That is, she held her fork in her left hand and used a knife with her right hand to cut up her chicken. I admit, I watched her do it, and I didn't even realize she was doing something special. It wasn't until she pointed it out later that I realized it was a new first.
Here's another sign in the same spirit. Linda has red foam grips that she slips onto silverware to make them fatter. We just refer to them as "the red things." I realized a few days ago that I don't know where they are, because Linda hasn't used them for about 2 weeks.
Her double vision keeps getting better too. She doesn't actually see double because of a prism glued to the inside of her eyeglasses, but even without the prism she can nearly see one image now. For very close images (like 4 inches away from her face) she can do it, but the images separate as things get far. Still that's better than ever.
Sunday, June 20, 2004
It seems that I caught the flu this weekend. I'd estimate that our favorite 2-year-old with blond curls is the culprit, since she is coughing and miserable too. Linda so far has escaped--we'll have to see. I always catch these things, but sometimes Linda is luckier.
Linda got up on her own this morning and did her own bath. That means she retrieved her walker, walked into the bathroom, undressed, and washed herself and her hair. I helped her get dressed when she was finished because it is easier with help when you are wet.
I think we'll spend the day in a low energy way, probably watching movies on TV.
Thursday, June 17, 2004
The Walking Rule
This morning, Linda handed me a sheet of paper with this handwritten message on it. New Rule: When we go out, I walk with the walker; except at Hy-Vee and Wal-mart.
Update: Linda informed me later that she wrote it in cursive which is easier than printing.
Wednesday, June 16, 2004
Walking to therapy
On the suggestion of the physical therapist, Linda left the wheelchair in the car and walked to all of her therapies today with the walker. It made for a pretty tiring session, but she did OK. I think walking is going to be the new rule now. Everybody cheer!
Tuesday, June 15, 2004
Ellie Morgan, speech therapist
It might surprise you, but Linda isn't particularly good about doing her homework. I think she feels like living is therapy enough. Oh, sometimes she'll do some activity if it strikes her fancy, but not like when she was at Rusk. I think the difference is that everything she did at Rusk was to get her home faster, and now she's here.
Well tonight, Linda suggested that we make popcorn. I admit, I wasn't keen on the idea, because it was about Ellie's bedtime. I like it when Ellie goes to bed. Most parents feel the same about their kids I suspect. I have to be "on" whenever Ellie is home or she does unfathomable things, like drawing on Linda's white t-shirt (while she is wearing it) with crayons or rubbing diaper cream on Linda's arms. (Both of those things have really happened.) So I like the opportunity to relax when Ellie goes down.
Oh well. We made popcorn anyway, and it turned out to be fun. Linda used to be the one to make popcorn, but Ellie always helped, so I had her help me too. Then we sat at the table and ate it together--with blue Pepsi cans. Ellie asked for blue Pepsi cans by color, as if they come in other colors.
Linda mentions that picking up popcorn is good OT, and she used her left hand part of the time.
With Ellie, it is also good speech therapy. Over a period of about 15 minutes, I think Ellie happened on about 3/4 of the speech therapy assignments that Linda has been neglecting, just goofing around with us. Tongue out, up, down, left, right, in each cheek. Making scrunched up angry faces, and surprised faces, and pushing your lips to the left and right. We did spitting, and we did blowing bubbles in our glasses with a straw. Ellie called out turns, "Daddy's turn," and "my turn," and "Mommy's turn." We made silly sounds that only the 2 and under crowd usually care about like the "bbbbbb" sound of running your fingers back and forth over your lips.
Personally, I think Ellie's favorite was the spitting. I'm pretty sure that she got in trouble for that when she stayed with her aunt, so laughing about it with Mom and Dad probably feels really rebellious.
Sunday, June 13, 2004
New PT first of sorts
Linda did a little "free style" walking this morning, i.e. without the walker. It was just from the bath tub to the wheelchair after her bath, but you have to start with small things. Naturally, she had her boots on (for support) and I was there holding her gait belt to make sure she didn't clobber herself. We'll try again tomorrow morning.
Our last best hope... for peace
Today we watched an episode of Babylon 5, the best science fiction series written for television. It doesn't sound like something worth reporting, but it is one of the "family things" that we did before the stroke. It is probably something of a surprise that we didn't get back to it sooner. For whatever reason we didn't, so that makes today another first.
I met Mira Furlan once (she plays Delenn). It was terrific. I asked her what she was doing on Saturday night. In Croatian.
Except for "hi," that's the only thing I know how to say in Croatian.
Saturday, June 12, 2004
Obviously there isn't therapy on the weekend. Of course, just living is therapy enough sometimes. We did a bit more crawling this morning, and Linda continues doing things around the house to be as independent as she can be. We are getting the hang of a lot of stuff now, so we understand something of the routine.
Ellie has been a bit trying the last day or so, especially last night and this morning. She did tell me last night that she likes thunderstorms (at 1am--I bet you can guess why we were up). She tells me they make funny noises, and sometimes smashes. She also likes the flashing light. The way she talks is so cute.
This afternoon I put her down for a nap, since I needed a break from her. She obviously needed it, because she slept for an hour and a half. She normally isn't much of a napper, so I didn't know how it would go. Boy she woke up with lots of energy though. You really have to make the most of those nap times!
Thursday, June 10, 2004
A night of magic
We went to see Harry Potter in the theater last night. Linda liked it a lot. I'm not sure if I did. I had just listened to the 3rd book on audio while driving to and from Columbia, so I knew the story really well. I found a lot of the things they changed very distracting. I think we'll manage to see it again soon, so maybe the 2nd time will be different.
Linda mentioned this morning that seeing H.P. in Kirksville was a big goal of hers. She really wanted to be home before it came out--we barely made it. She said, "I didn't know it was this close."
Searching the croud
I was thinking about Tori the other day, because of Ellie. I recently moved Ellie's car seat to the middle of the back seat so she can have more leg room. She can also see out the front window, so she often asks about things we pass. She is particularly fond of blinking street lights. I told her that blinking yellow lights mean, "Be careful."
So the next day we are driving along the same way and suddenly Ellie says in the back seat, "Beeeee careful." It sounded just like Tori--made me laugh.
Sometimes in crowds I find myself looking for the therapists. Isn't that funny?
Crawling like a baby
Linda crawled today, just moments ago. She had successfully done "all fours" a couple of times already. The OT yesterday suggested to Linda that she should try crawling. She crawled the length of our living room, sat and rested, then crawled back to the wheelchair. No assistance needed, except getting to the floor carefully from the chair without falling.
If that doesn't delight you, then let me add that at the end Linda kneeled in front of the wheelchair, stood up, and sat herself back in the chair alone. It was a bit precarious for my taste, but you know how Linda is, the next time will be better.
Tuesday, June 08, 2004
More questions than answers
We took a road trip to Columbia to see the hematologist. It was one of those things that didn't get done before we came home. Ellie came along. I didn't think we would take her, but Linda said we should ask her what she wanted to do. I told her 2.5-year-olds don't have those kind of opinions, but we asked anyway and she chose to go.
Unfortunately, none of Linda's records were there when we showed up for the appointment. They scrambled some to get the labs faxed in. While some of the lab results could be obtained, they don't really know everything that was tested and they certainly didn't have all of the results. In the end it was mostly hypothetical musings: If they (meaning Boone/Rusk) didn't test for this, then we should probably screen for it. It it turns out one way, that can mean something. Otherwise something else. It might be significant for siblings (and Ellie) and it might not.
One thing they did have enough information to say was that Linda is getting the correct treatment (blood thinner).
They are going to get back with us when they have Linda's lab results gathered from Boone and Rusk. Then we'll see if we need more tests, and we should be able to ask the important questions.
We did get a chance to see most of the therapists quickly at Rusk and say hello. That was nice.
Monday, June 07, 2004
Little girl lost
We were at Wal-Mart the other day, and Ellie had wandered ahead. Although I could see her, she couldn't see us and she started to get worried. No big deal. I called to her, and she was fine.
Later that day, Ellie said, "I lost Mom and Dad."
"At Wal-Mart?" I asked.
"No. At the hospital."
Sunday, June 06, 2004
Things that go boom in the night
Linda and I put Ellie to bed at 8pm last night so we could watch Return of the King. We didn't finish it, which was fine because we were both tired. But the thing that actually stopped us was Ellie. About 3/4 of the way through the movie, I heard her crying in her room. When I went in, she was sitting in bed shaking. She was afraid of the "thunder." When we started the movie, I had wondered if the loud sounds and music might wake her up.
I told her that it wasn't thunder, it was just a movie. She said, "I listened it. It was scary." I agreed that it was scary and asked her if she would like to come out and sit with us. When I picked her up, she was shivering. Even her teeth were clicking. You'd think I had left her outside in winter without a coat.
So she sat on my lap, then on Linda's lap. I showed her that it wasn't raining outside (no thunder). Eventually we all decided that we should turn off the TV which had been paused. She went to bed without much fuss, although she did insist on having the light on. She slept for the rest of the night.
Saturday, June 05, 2004
The Joy of Parenting
Ellie was up at 2:15am this morning, and I couldn't send Linda this time. Ellie wasn't upset, but she didn't want to sleep either. She wanted to tell me about going in the ditch with Marilyn. "I went BUMP in Mom's car. It was scary. I said, 'Whoa!'" I talked with her for a few minutes and she went back to sleep.
Friday, June 04, 2004
Reunited with Ellie
Ellie came home this afternoon about 4:30. Linda and I were in therapy when she arrived, but she didn't have long to wait. She was pretty glad to see us, and her kitties, and her "pig movie" (Charlotte's Web). She stood in the yard grinning and waved happily at Linda as I backed the car in.
Ellie was delighted that the kitties have come down from the attic of the house. They just came down today actually, so that was good luck for her. She promptly remarked, "My little kitties are BIGGER." She obviously knows bigger and smaller as well as faster and slower since she demonstrated both concepts for us today.
She also has some of her first adverbs apparently. She got a bug bite in her shorts this evening when we were at the square. So that I didn't misunderstand how unpleasant that was, she informed me that, "It REALLY hurts." I don't know how much it REALLY hurt, but apparently enough to require a Blue's Clues band-aid.
Anyone who has seen Ellie knows that she has grown a lot the last 4 months. But she was refreshingly the same this evening. She played the same games, including her all time favorite: pretending to sleep. Or maybe she just got out the old games because she was glad we were back. We teased some. At one point I said, "Tell Mom to go back to the hospital," and Ellie put on a very stern face and told Linda precisely that (Linda said no way).
Obviously she like us home, though. Because tonight, as I was putting her to bed, Ellie said, "You don't go back to the hospital tonight." I told her that if she went to bed, Linda and I would stay home. She was cool with that.
Thursday, June 03, 2004
A busy day running around
I sort of wore Linda out today running errands. We stopped at the university, the bank, and Hy Vee before going to therapy this afternoon.
We had speech first again today. Unfortunately, the topic was whistles. Blowing a whistle turns out to be a pretty good exercise for someone with Linda's speech problems. But what the therapist didn't know is Linda really doesn't like whistles. Add a bit of lability to this equation, and what you get is 30 minutes of crying during a speech session. Speech always has been the hardest thing for Linda.
David (the OT) worked on strength with Linda. He added a sitting up dowel exercise to the other ones she was doing, sort of a bench press straight out in front of you. The idea is to work the shoulders. He also did some "wringing" exercises and gripping exercises with her.
In PT, Linda worked did some walking. She tried a walker without wheels for the first time and said it's harder than a wheel walker (but she did a good job). She did a bit of walking in the parallel bars, and also a bit of walking with just the therapist in front of her. Linda did one new thing during the session, some trampoline work. She stepped up onto a trampoline and the did weight shifting and bouncing and things like that. They finished the session sitting on a ball and rocking her hips in different ways.
After dinner tonight (yes, I cooked again) we went to the theater to see Troy. We both had wanted to see it, but more importantly, we wanted to practice the theater to be ready for Harry Potter and the Prisoner of Azkaban next week. Luckily Linda likes to sit in the back of the theater, since that is where the space for wheelchairs is. Neither of us cared overly much for Troy although we didn't hate it either. Since the film is pretty scratched we got "buy one get one free" coupons with our tickets. That actually pretty well expresses what I thought of the movie too.
When we got home, Kate (feline) had pooped on the bed again. My side. Why is it always my side? I didn't realize before I let her out, or I might have introduced her to the blunt end of a broom handle and added a bloodstain to go with it. Maybe I'm just being optimistic, cats are pretty fast and there's no guarantee I'd actually be able to wallop her adequately if I tried.
Unfortunately, when I opened the window to air out the bedroom I discovered that the neighbors are burning garbage and the delicate odor of burning plasting wafted in. That so sucks because now my allergies are going to bother me all night. I have tried to hint to Linda (and I'm not particularly subtle) that people can't burn their garbage around you when you live in town.
Wednesday, June 02, 2004
Therapy - starting all over
We just got back from Linda's first outpatient therapy sessions. She had all three: speech, physical, and occupational therapy. Since it was her first day, everything was pretty much evaluative.
Speech was first, with Andrea. As coincidence would have it, I already knew her. She was the soprano that sat next to me when I sang in the choir in college. She ran Linda through lots of speaking drills, tongue exercises, and so on. A lot of them were ones she did at Rusk, so it was very familiar.
Chris was Linda's physical therapist. She did some leg and ankle stretching and observed how well Linda could do various movements. She had Linda walk, both with her walker and in the parallel bars. It sounds like one of her big goals for Linda will be to reduce the stiffness she has when she walks. It is difficult to walk well without a certain kind of flexibility and fluidity of movement.
The occupational therapist is David. He's the one Linda will get a crush on, because he's the only guy of course. He measured the strength and range of Linda's arms and hands very carefully. She has very good strength in many directions. She still has a lot of shoulder weakness, which is not unusual. He encouraged her to start doing "living tasks" with her left hand more. He said that will really make it come alive--right now it is lagging the right hand in terms of strength and ability despite being the first hand to "come back." We were starting to focus on the left hand more at Rusk as well, so this is not unexpected.
Everyone was pleased to see how well she was doing so quickly after such a severe injury.
All in all, Linda said it was almost exactly what she expected for a first session. She is finding it a bit difficult mentally to be starting up therapy again. The long hard slog of rehabilitation feels long and hard today. It will get better when the therapists start feeling more like friends and less like clinicians. As friendly as Linda is, that won't take long.
Tuesday, June 01, 2004
A beautiful day for swinging
It was such a nice day today, that Linda wanted to go out in the back yard. I didn't know how well we'd do with the wheelchair, since it was hard taking her loaner in the grass. But it turned out to be not too bad. Linda wanted to see the garden that was put in for us. It looks really good. She also wanted to look at her car, which doesn't look as great.
Linda's favorite thing to do in the back yard is swing, and she actually has two swings. She has a forest green porch swing that I made for her, and she has a canvas swing called a sky chair. The sky chair is hard to get in and out for regular people, so I don't think we are ready for that yet. But she did get to swing on her porch swing. I just brought the chair over and we did the transfer carefully (since the swing can move, obviously). It was actually easier than I expected.
She took a pen and pad out with her so she could write down notes for the book she is writing about her experience. Yes, she has started it. I know a lot of you wanted her to do that. Sometimes now, I say, "Do you even remember what it felt like when ...?" Every once in a while, she'll just answer, "Wait until I write my book. I'll put it in there." She has started typing a bit up on her computer, very slowly. She used to touch type, but it's hunt and peck for now. Still I think it's great. If nothing else, typing is a great OT exercise; a nice combination of gross and fine motor movements.
We went to dinner tonight at Pagliais. I was in kind of a down mood. I pinched her hand in the door trying to get the wheelchair from being hung up on the threshold. I think that really hurt, but she played it down. Then we sat in a booth next to a family of chain smokers, about the stinkiest thing ever. Normally we'd have switched tables, although Pagliais is so small it really doesn't make much difference. But it's too hard to do that now, so we just toughed it out. I feel bad for their young children. They have to live with that. My Ronza was good.
Tomorrow, we have Linda's first outpatient therapy appointment. It seemed like forever when they told me Linda's first appointment wouldn't be until Wednesday this week. And here we are, Tuesday night already. Wow.
Ellie will be coming home soon, too. I haven't talked to Marilyn lately, but the last time we spoke, she was talking about Thursday. That will really turn things upside down again, but Ellie's going to be really glad to have her mom at home again.