Dad's notes on Lisa's recovery

August, 1998

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Ann Arbor - Monday 8/31/1998: hh:mm- Mike
Lisa played a cute trick on the Speech Therapist Lynn.

Lynn was working with her, evidently on tongue control, she was asking Lisa to stick out her tongue, touch her top lip, bottom lip, inside her cheek, etc.

At one point, Lynn was trying to get her to stick out her tongue and touch the spot right above the top lip, where the split usually is. Lynn told her "pretend there's a spot of peanut butter there you want to get." Lisa put her tongue out slightly, but it wasn't working the way she wanted it to. So, she pulled her tongue back into her mouth, touched it with the tip of a finger, then got the 'peanut butter' with that fingertip!

Ann Arbor - Saturday 8/29/1998: 17:00 - Mike
Lisa's therapy has gone well the last couple of days. On Thursday, she was playing with a puzzle with several different colored pieces. When she was asked to "hand mommy the blue piece" she found it and handed it over. When she was asked to hand over the next piece "Red", she didn't. I think the therapist was wondering whether Lisa was stalled on the color, but Jean and I figured out she was playing a game. She wouldn't give us the next piece until we gave her the first one back!

She was able to sit upright with her legs hanging over the edge of a couch for 26 seconds on Friday, her record so far!

Several of her visitors have reported a variety of commands she could follow, so she's playing games with them as well as mom and dad.

Last night (Friday), Dad went up to play some songs for her at bedtime. She grabbed my nose while I was sitting at the side of the bed, leaning over to talk to her. I couldn't figure out what she was doing, but I went along with it. She pulled me closer, so I had to lay my head down on the bed rail. Then, with her free fingers (having my nose between the thumb and index finger), she pushed my eyes closed. She wanted me to sleep with her! This makes sense, she used to climb into our bed night after night before, so she's probably wanting to get things back to normal in her own way.

Michelle and Nichole (cousins of Mike's) were at the hospital today. Nichole's trained in PT and we were giving Lisa a fairly tough workout. The girls stood her up and tried to see what would happen. She remembered that walking consists of moving the right leg, then the left. I don't want to make too much of it, since she certainly can't even stand without support, but seeing the body memory of "left, right, left" is encouraging.

she still isn't talking, but she's vocalizing quite a bit since about Wednesday. Just humming sounds, but at least she's making them. She's seems to be trying a little harder to keep her mouth closed and she looks like she swallowed on her own a few times today.

Ann Arbor - Tuesday 8/25/1998: 22:00 - Mike
Today, I attended Lisa's morning Physical Therapy lesson. She is able to sit upright with some support, that's one of the first things we're working on. She had a game in front of her in which she could touch any of several plastic animals to make a sound. She didn't do well at that one at all. Later, Jean and I and Trudy from CDC visited with her. We took her outside into the 2nd floor outdoors area. She was playing with us, responding pretty consistently to "where's your nose?" (eyes, mouth, chin). It was painfully slow for us to watch her arm try and locate itself in space and makes its way to the part of her face she wanted to touch, but she did it!

A friend named Dan was by earlier and said she was responding to things like "show me two fingers" and the like.

We have high hopes.

Ann Arbor - Monday 8/24/1998: 22:00 - Mike
This morning, Lisa met her speech therapist and another nurse. She had two PT and 2 OT visits and one from the speech therapist.

I realized that people might not have a good impression of Lisa's current condition, so when I make comments on what looks like progress, you might not now what it's progress in relation to...

Toward that end, let me explain Lisa's current condition.

Lisa spends most of her time on her back in bed. She's not able to sit upright by herself, but when someone raises her body, she has good head control and doesn't just flop to one side or the other.

She seems to have some gross motor control over her right arm. She seems to raise and lower it at will, but is only now beginning to show some control over moving it forward and backward in space, for instance to grasp an object.

She is not speaking at all, and not showing signs that she will be speaking at any time soon.

She is able to follow people and objects around the room by moving her eyes and turning her head from side to side.

She has some control over her mouth, seems to be smiling at will, and even chuckles when properly motivated.

She is not swallowing yet and often drools and needs to be dried off (chin and neck) pretty often.

All in all, though, she's showing signs of progress and she is still our daughter and we love her.

Ann Arbor - Saturday 8/22/1998: 23:00 - Mike
Earlier today, Sam Mikol came to visit her. We put Lisa in a wheelchair and walked her outside and down to the 2nd floor garden/play/walking area. She seemed to enjoy being outside. Lori brought her some sand to feel and some pine needles.

I just left the hospital a few minutes ago. Lisa continues to make good eye contact. I read her a new book from her friends the Hiranaka's, then I was singing some of her regular bedtime songs. She was squirming during a couple of them, pretty consistently the ones that Amy liked and Lisa didn't care for.

We had an old game in which I'd throw the word 'potato' in randomly into lines of a song. I did that tonight for the first time since the accident. She wasn't able to yell out the right lyric like she used to, but she cracked a great big smile a time or two.

She stayed awake during "City of New Orleans", "Closer to the Light" and "I Miss Your Smile" saw her drowsing and "Homeward Bound" put her all the way to sleep.

Ann Arbor - Saturday 8/22/1998: 15:00 - Mike
Yesterday, Lisa showed a lot of response to visitors. Seemed to try and lean forward to hug Julia Caproni when she visited. Squeezed my finger several times on request with her right hand. Still no response from her left.

Still tube feeding.

Good head control when she's set up

Lisa's asleep. She was dreaming (I assume) and rolled side to side, moved her arms and legs around a bit - just like she used to. Acutally, just her right arm and both legs. No real left arm motion.

Ann Arbor - Thursday 8/20/1998 2200 - Mike
This afternoon, Lisa was moved from Petoskey to Ann Arbor. Some notes on yesterday:

Cindy the day nurse put Lisa in a peds wheelchair and walked her around the ICU floor. She is still coughing weakly, but I think they only suctioned her once today. She realy doesn't like that.

Today, she was showing more signs of looking around intently in the morning. Leg seems to have stopped its random thrashing. Still having some problems with her index and middle finger of her left hand. They extend out and back, but it sounds like that may go away in therapy.

So, Lisa and I flew down in a Cessna jet with two nurses (Kim and Kris). They were very friendly and professional.

After we arrived at Mott, Lisa had her first two visitors: Tara and Sean from CDC. Lisa made a big jump: she broke out into a big smile when she saw Sean and she threw her right arm up, like she was trying to wave at him.

Some others came: Trudy (who made a beautiful quilt), Audrey and Laura. She was watching them and seemed to recognize them, but her only big smiles were the four or five times she spied Sean.

Bit it was an obvious smile and that's great.

Several others are to see her tomorrow: PT, OT, Speech people, etc. It sounds like they're putting together a pretty intense program for her. I said to someone 'it'll be like being in school already'.

Petoskey - Tuesday 8/18/1998 1100 - Mike
Heard from Vince this morning that someone told her to raise 2 fingers and it looked like she tried. Also "raise your right arm" and she tried.

We came in at 11:20 but she was asleep so we left her alone. Right now, Jean is downstairs in the cafeteria.

Yesterday, Doctor said she can be flown to Ann Arbor in a day or two. She'll be at Mott Children's Hospital for a long rehab.

Petoskey - Tuesday 8/18/1998 2000 - Mike
Lisa is still recovering nicely. No repeat of the 'raise your arm' episode.
Petoskey - Monday 8/17/1998 1100 - Mike
Yesterday PT held Lisa up. Her knees did not buckle and she had decent head support - both good signs.

She was listening to the story "I Want your Moo" and her pulse rate rose when there was a suspsnseful part, dropped back to calm when there was a resolution. We think we saw her smile 2 or 3 times.

The Pt decided not to do serial casting (or splinting) on Lisa at this time. For her ankles.

She is kicking pretty regularly with her right leg. There's disagreement on what's going on, some say it's just muscle spasm.

It looks like she might be recognizing several faces, per Jean she shows some signs of fear if she doesn't recognize the face.

She has strong head control. Still not feeding her, she's IV and nasal tube.

Petoskey - Friday 8/14/1998 writing at 20:50 - Mike
I was over to see Lisa several times today, iuncluding this morning before our 10 a.m. meeting. She's focusing on the TV and some of the nurses, don't think she focused on me. This afternoon, I read her Corduroy and a few other books. She would focus her eyes on the picutres when I held them up CDC style. Must less of the trembling that looks like fear may be that they have her mildlly sedated. It may be that she's less scared. It may also be that those motions were more muscle spasm than fear.

My own two-bits theory is that she's trying to do purposeful action but her body can't support it and - to us - it looks like random jerking motion.

Petoskey - Thursday 8/13/1998 2200? - Mike
I went over to the hopsital at about 2100 and started telling her 'madeup stories'. She'd been thrashing her right leg for a few nights, ostensibly at randon. I noticed that she kept thrashing that leg and squirming - noticed that she kept edging toward the edge of the bed I was sitting on. First her feet, then her knees and hips, finally I noticed that her head was sliding down the pillow support.

It struck me that she was trying to crawl/slide off the bed into my lap! So, I asked Mike (the overnight guy) if he could put her in my lap. He asked Lisa's nurse who said yes. So, I ended up holding her and telling her stories and singing songs.