Dad's notes on Lisa's recovery

September, 1998

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Ann Arbor - 9/30/98 16:00 PM Central Daylight Time - Mike
Sorry, no updates right now - but I scanned a couple of photos. Click below to see each one.

A quick note from Mike - Lisa has had a lot of visitors since we returned to Ann Arbor. I don't want anyone to get the idea that the people whose names I drop into the paragraphs below are the only visitors she's had. There's been no real rhyme nor reason to the names I occasionally drop in or leave out.

I felt compelled to write that because I wrestle with it every time I update this page and thought it might occur to others as well...

Ann Arbor - 9/20/98 11:03:26 PM Central Daylight Time - Mike
The general news is: Lisa was discharged from Mott on Friday! We're going to start outpatient therapy for her on Monday - physical therapy, occupational therapy, and speech. Someone from Eberwhite is going to coordinate with the rehab center here to see what we can do about keeping her up with school work and reintegrating her into the classroom, possibly before the end of the year.

She's going to have an aide most of the time to help her with basics like getting dressed and using the toilet. The biggest thing we're concerned about is that they say secondary head injuries are common It's probably a combination of the body just being unstable and something called 'impulsivity' - something TBI cases have for 6 months to a year after the incident that causes them to make bad decisions, like falling down stairs. That's coupled with the fact that brain injuries are geometrically more dangerous to people recovering from previous brain injuries - which will unfortunately mean a good number of years before mom and dad are safe seeing her ice skate, ride a bike, or play soccer.

On Saturday, Lisa went out in the car to Payless shoes to shop for a new pair of shoes. The ones she was wearing were too tight for her leg brace to fit easily, and we wanted to get out of the house. She shopped for only a little while, bought the shoes, then we took a short trip to Burns Park. She mostly rode around in the wheelchair, but enjoyed being out in the sun.

She spent a few hours out of the house Sunday visiting friends, an experience that was great for her and exhausting for dad. The biggest challenge was that she wanted to go on the swings. The answer was: sure, you can swing as long as the length of dad's arm. The PT at Mott supplied us with a webbed belt about 3 inches wide that Lisa wears and that Dad holds when she's standing, walking, or sitting on a swing. But, even that 3 foot arc was a thrill for her.

She had a wonderful time with Julia and Leah (and Sean a little bit) - coloring, playing dress up, coloring with sidewalk chalk (more specifically, making 'magic dust' by scraping the chalk against a concrete wall).

Later, some of Amy's older friends did her nails and danced with her to the Spice Girls' music. A great first weekend out of the hospital.

Jean is still confined to a walker and wheelchair - the word on her knee is still "no weight bearing". Which puts her out of the running for doing much primary care for Lisa, and for walking up and down stairs. We're still expecting 2 more weeks before they start talking about simple weight bearing.

Mike started physical therapy for the shoulder this week - that should not be a very long road. I tried lifting Lisa today and paid for it shortly after, but I expect that is just a matter of working the shoulder a bit and getting some strength back.

We haven't been able to go back to our house - the bathroom and bedrooms are on the 2nd floor and neither Jean nor Lisa can make the stairs. So, we've stayed with ----friends and are currently staying at a hotel. We're not sure where we're going to be later this week, but we'll let people know once we've decided.

Ann Arbor - Monday 9/14/1998: 23:00 - Mike

Lots to report! (Dad's been feeling down and hasn't posted anything in about a week.)

Lisa is eating like a trooper now! Which means she's back to normal: won't eat things she doesn't like. Dinner consists of mashed potatoes, vanilla yogurt, grilled cheese, basically Stuff Kids Like.

She's eating so well they're cutting back her tube feeds (tonight might be the last one...) and hoping she can get all her calories from her plate.

She's mastered sitting up and is standing on her own now. The record seems to be about 1.5 minutes, but that's where it all starts, right?

She can walk with assistance - we're hoping to see her on her own by next week, walking short distances with only one hand support.

Her personality is very much back to normal with some significant exceptions. She is giggly and laughing most of the time - which looks a lot like the old Lisa. She also plays tricks - will give me the wrong answer to a question, then laugh, give me the right one, and say 'tricked ya'. This is often disconcerting, even to us who know her so well.

Some of the exceptions are short term memory and attitude.

Re short term memory, she can remember things from before the accident - people's names, what she did that last day, but she's not processing data from the same day. I mentioned this a few days ago. What we're starting to see is that she IS keeping some data. She knew, for instance, that Little Guy (our Guinea Pig) is a girl, which we found out only a few weeks ago.

Re attitude, this has been a little disturbing, but we're assured it's normal. She will sometimes get a little meaner than she's ever been. Sticking her tongue out at people, hitting. Mostly, it's directed at dad, which is OK. And maybe she know's it's OK, since she trusts mom and dad and knows we know she's working something out.

What we're sure she's working out is Amy's death.

We told her a while ago that we had a car accident and that the van is gone and that Amy's body was hurt so bad the doctors could not fix it. She's mentioned the accident and fact that the van is dead several times, but has only talked about Amy a few times, and that, indirectly.

A few days ago, she was hitting some toys and talking about one being named Amy. We assume that's what they call 'acting out'.

Tonight, though, when I was making up a story for her, she wanted the main character t be named Amy. So, I went along with it. It seemed OK for her, and she fell asleep right after, so who knows how well she's coming to terms with it already.

Ann Arbor - Wednesday 9/9/1998: 22:00 - Frank

Grandma Fedel and Aunt Helen went to visit Lisa in the hospital today to read her a bedtime story, visit with her briefly, and maybe take her outside for a walk. They didn't get a chance to do that, though... Lisa had something else on her mind. Lisa said she was "super-duper hungry" after seeing some cookies that were sitting around.

Grandma Fedel noticed a sign by her bed saying something to the effect of, "she cannot have liquids, but she can have chunky/soft solids (such as mashed potatoes)."

When the nurse came in to hook up Lisa's NG tube (to feed her), Grandma said, "What about this note over here, can she eat food?" The nurse called the physician to double-check, and sure enough, Lisa was able to have some food. So at 5:30 p.m. she got her tray of food. It had mashed potatoes, red jello, meatloaf, pineapple and corn.

Grandma and Aunt Helen decided that they should call Mom & Dad to let them know that she would be eating food, so they could come down to see.

Dad made it to the hospital by 6:00 p.m. with a camcorder, and videotaped her while she was eating.

While she was eating, she had a little difficulty with the spoon, so Grandma said, "here, let me help." Lisa said, "no!" and did it herself! She was persistent and determined to do it, and she did!

Lisa ate about 1/2 of her mashed potatoes, and about 1/2 of her jello. She tried a couple bites of the pineapple, corn and meatloaf, but they were too hard for her to chew and try to swallow. But the excitement about her progress overshadowed any small problems with chewing the harder foods.

As a "prize" for doing so well and eating, Lisa's roommate Kim painted Lisa's fingernails silver for her. Lisa liked it.

Ann Arbor - Tuesday 9/8/1998: 22:00 - Mike

Today, we had a family conference (group meeting) with Lisa's entire treatment team. They expect a Sept 21 discharge date. Her progress is wonderful, she might be standing in a few days, maybe walking by the middle of next week.

We spent some time with Lisa in speech therapy today and learned some things we probably knew but were trying to avoid.

Before describing what's going on, I need to write that the problems we're seeing are normal for someone in her stage of recovery, so we're trying to take them in stride as opposed to being scared about them.

Lisa's not making certain connections that we would have assumed she'd make. For instance, when asked to give a list of animals, she could only come up with about 4, three of which were pets of ours and "dog" which was the pet of a good neighbor next door.

Asked to list animals that might be found on a farm or in a zoo, she wasn't able to name any. Prompted with "what animal makes this sound?" or "what animal is big and grey and has a long trunk?" she was able to come up with answers, but still didn't go beyond those.

She also has trouble remembering the names of her various therapists, even when told one name at the start of a session, she couldn't recall it 30 minutes later at the end.

Calyn Dolan visited and painted Lisa's nails tonight. About an hour after Calyn and her mom left, Lisa couldn't recall who did her nails.

When Trudy from CDC came in, Lisa said "Hi, Trudy!" but later, when we asked "who is this?" she couldn't come up with Trudy's name.

As I said above, this is not unusual - the ability to come up with a person's name when she sees them but then not do it on demand is recognized as a stage in her recovery (there's a technical name, of course, but I don't recall it).

There was an interesting glimpse into the question "is Lisa aware that Amy is dead?" (I'm not sure if I wrote about the day we told her that Amy died, if I dind't, I'll add it later and put a link here.)

Lisa has a new ragdoll from her hospital stay. We weren't there when she got it, so I'm not sure who it was from (if anyone knows, please let me know). It's got red yarn hair, a dress that looks like an apron tied around her, and a tag on the back that says "Detroit Hasaddah" I believe.

Anyway, she was playing with the doll and it's eyes have come off over the last few days. Tonight, she was talking with Erin (the girls' #1 requested babysitter) and started to draw eyes on the doll with a black magic marker. Then, she got a bit agitated and drew a scar on the dolls forehead. She laughed and said "tricked you! she's dead!" Jean and I caught that part and asked the dollie's name. Lisa said "Amy Fedel Lisa". Then, she got a bit more agitated and started scribbling on the dolls face, then poking it with the marker.

We asked if she was mad at the doll and she said yes. Playing Junior Therapist, we fished around if she was mad at the doll for dying and some other questions. She got tired of the game, put the doll down, and changed the subject.

We're wondering if this was the beginning of her starting to deal with the fact that her sister's actually gone. I'm sure we won't know for a while yet.

Ann Arbor - Sunday 9/6/1998: 22:00 - Mike
Today, I was talking with Lisa in the play area. She was with her friends Julia and Lea when I arrived. We chatted a bit (she's more and more animated and clear every day) about what they'd been doing. Then, I noticed she was touching her hair again. It might not be clear from the photos, but there is a patch coverning nearly the front 1/4 of her head that was shaved clean in Petoskey to insert the ICP monitor. The hair is growing back in, but is very short still.

I asked her if she knew who had cut her hair.

She said "dad".

I asked her why I would do that.

She said "because you thought I'd like it".

I asked "Do you?"

She said "No".

I tried explanining to her that it was done by the doctors. She accepted the explanation, but I don't know if she bought it.

Thursday, the PT had her standing a bit. She's supporting her weight fairly well, but her left knee is hyperextending. They believe it's somehow connected with the position of her left ankle, so there was a mold made for a brace for the left ankle. She'll probably get that brace early next week.

Don't know how long they expect she might need to wear it.

She's been wearing a brace on her left hand for a couple of weeks now. It seems to be because of some control problems she's having with her fingers on the left hand, but I haven't really got details on it.
On Friday, the afternoon OT had Lisa licking a sucker. She said it's OK, as along as we're watching her, making sure she swallows and that she doesn't bite it. So, we bought some and let her have another yesterday and another today.

Part of the package for Lisa is that she has to use her 'lollipop' hand, which is her left hand. Her right hand shows a lot of control (she is almost able to write "LISA"), but her left hand is coming along more slowly. She can close her fingers, but it's still a slow and awkward process. We're hoping the lollipop bribe will help!

Ann Arbor - Friday 9/4/1998: 22:00 - Mike
A photo (retouched to lighten it a bit) of Lisa last Sunday afternoon. Her cousins came to visit and brought her outside. She sat up on different laps for a while, getting stronger and more trunk control.

The week's been great for Lisa.

Yesterday (Thursday) she had a rocket ship trip in her bed. She's in an enclosed bed (she moves around a lot and actually fell out of bed a few nights ago) which means a net wall on all four sides that zips open and closed. She had several visitor - Julia, Lea, Lila, Rachel, and Dan (OK, who'd I miss?) - and they were all on her bed with the sides zipped. They were talking about going on a rocket ship ride to the moon (according to Lisa and several other planets on the way (according to Julia, who I think was the driver...)

She's talking in sentences, still very slow voiced (picture someone with CP and a quiet voice), but working longer phrases. She told her speech therapist today that "I want to tell you about my black cat Ebony."

She's sitting on her own for long stretches now, even cross legged on her bed. She was fitted for an ankle support (to keep her left ankle 90 degrees when standing) and I think may be standing by the middle of next week... (no one's told us that, i just have a feeling...)

Ann Arbor - Tuesday 9/1/1998: 23:00- Mike
Lisa's first words today!

Lisa says her first words since the crash! First word is "mom". Jean spent the night in the hospital with Lisa since Mike was up north. So, she went to speech therapy. The therapist (Lynn) pointed to Jean and asked Lisa who that was. Slow and difficult, but Lisa mouths the word "mom" very softly.

From there, they moved on to a few others. When Mike came back, we went back to the hospital and Lisa said "Hi" as soon as we walked in, waving her hand and looking at us. She counted to five, did her ABCs to about J (at which point, I think she got bored...), we called Grandma and she said "hi" and "bye" on the phone.

The voice is very soft and weak, articulation is a bit imprecise, but she's got her voice back!

Things are looking GREAT!