monday evening

another week begins at kumc. gen had physical therapy in the morning, and did the sitting balance. claude said gen's head and back were "stronger and straighter than she had yet seen." she said it with a french accent, so it sounded better than when i say it. we did speech therapy in the afternoon while gen was in the cardiac chair. in this session, gen got the "th" motion and a great big "eee" motion down pat. we were so excited and happy. she counted to 10 with mouth motion and sound to go along with it. yay, gen! behind the scenes, we had a bit of trouble with the car (we are using it because of the generosity of josh's mom and we really appreciate having transportation). there was a problem with the distributor cap, and two friends of josh's (morgan and mike) came from lawrence and fixed it for us. they got to visit gen also, and it was the first time they had seen her since she was in the icu. imagine their happiness to see her like she is now...what a blessing for all of us! that's about it...

susan and josh

sunday evening

gen had another quiet day today. we had some company, watched some tv and a movie, did the usual medicine and food things. gen had a bit of an upset stomach and skipped one of her "meals." she is on a new antibiotic and might be having a reaction to it. we are keeping an eye on that situation. gen did some work with the speaking valve today and got into the chair for two hours in the afternoon. weekends are hard in a way, because we have no real structure to the days. we have different nurses who don't know gen at all and who don't do more than is necessary for her. we have resident doctors making rounds who, again, don't know gen and pop in to "assess" her without knowing what they are looking for. for those reasons we like the weekdays better i think. but since we don't have structure, she can rest more, which gets her ready for another week of workouts. all in all, it was a good weekend and we thank God for all the blessings we enjoyed. susn

susan

satturday night

today was quite relaxed. we didn't do much til 4pm, when gen got into the cardiac chair. we had some visitors and that was fun. we worked with the speaking valve on and off throughout the day. we did plenty of napping and tv-watching.
even on the days when nothing huge happens, we still see improvements in all the other things gen has already learned to do. her tongue movements are getting broader and quicker. quicker toe, mouth, head movements. bigger range of motion in everything that can move. she has been sleeping with her head turned to the left (big improvement!).

-joshua

friday night

there is something of a routine in place during days here, but there are always little changes that keep things interesting. gen has medicine and food (ultracal through the feeding peg) administered at regular intervals throughout the day. the nurses have accommodated us by arranging feedings so gen doesn't have to have one at 6am. she is not a morning person, and she does better without that meal. the doctor has also tweaked her doses of muscle relaxant based on the tension ("tone") she has in her legs and arms, especially at night and during strenuous workouts. the new dose seems to be helping and she doesn't have as much trouble with her muscles tensing and causing pain. today, still following the general order of the day, we got gen dressed and into the wheel chair by 11 and took her on a tour of the old icu where she spent the first two weeks here. then we went to physical therapy. she got to choose her activity there, and she picked the standing frame. she likes this the least i think, but she wants to master it. she impressed the physical therapist and occupational therapist by standing fairly straight, holding herself up and by keeping her feet fairly straight. (especially her left foot tends to tip over on its side when she is standing, and that is painful.) today she kept them both fairly flat. after we got back to the room, speech therapy came, and the therapist was impressed by the improved tongue motion gen exhibited. she has been practicing, and she got her tongue to go up and down, and from side to side. not huge movements, but definitely movements. we were all happy for her. she is still working with the speaking valve, both in therapy and with josh and me here in the room. we will also continue to work over the weekend, lord willing. gen is not satisfied with her speaking voice yet, and if i know her, she will keep doing the exercises necessary to strengthen the muscles she needs to speak the way she wants to. so many things to which we don't give a second thought. say the letter "e" and really think about what your cheeks, lips, teeth, tongue and jaw are doing. we are fearfully and wonderfully made according to the psalm, and i appreciate so much what God has done for us here. thank you all for praying for us, and thank you for letting us know you care.

susan for the gang

thursday evening

our schedule was different today. gen went to pt today at 11:30am. she stood on the parallel bars again today. she did a good job of holding her trunk up and straightening her head. we worked with the speaking valve and on mouthing words throughout the day. gen asked a lot of questions about what happened before she came to ku. we explained it all to her and had a good laugh.

-joshua

wednesday evening

genevieve had a huge day today. she worked on speaking while she was in her chair this morning. josh and i were taught how to use the speaking valve and were given permission to work with her 20 minutes out every hour. we didn't do quite that much because of other activities today, but we gave it our best shot. in the afternoon we got her dressed and claude took her to the rehab gym where she did the "tall kneel." this involved gen's kneeling on a padded table, and supporting her arms on a small stool in front of her. all the weight of her torso was on her arms, and she had to keep her elbow straight and her hands on the stool. she also held herself up straight and had very little help from the rest of us. she got to watch herself in a mirror (at the same time helpful and not fun...who really likes the way they look in a full-length mirror in the gym?) as soon as we got back to the room, speech therapy came in and gen worked with the speech valve some more. the lady from rehab came and did a reevaluation on gen's condition. all of gen's therapist's (speech, physical, and occupational) have upgraded their recommendations from "skilled nursing facility" to "in-patient rehab." this is due to the tremendous progress has shown in the past two weeks. this is a big help in getting her accepted into a rehab facility. we should hear back from the rehab lady some time next week.

jenny- gen wants you to know:
"we can dance if we want to.
we can leave our friends behind...
cause your friends can't dance
and, if they can't dance,
then they're... no friends of mine."

-susan and joshua and genevieve

tuesday evening

today was a good day. our schedule got mixed because claude lost an inlay while flossing and had to go see the dentist. we didn't get to go to the pt wing today. instead, we had pt in the room. gen did very well today. she did this excercise while she was sitting on the side of the bed where we lean her to her side, elbow bent. she then has to straighten her arm using her triceps, and this pushes her up. speech therapy came at 2pm. gen did very well during speech therapy, too. she kept the speaking valve on for almost half an hour. during a counting excercise, we heard gen say "seven" and "four." the "f" and "v" sounds are getting easier for her, since they are lip movements. we laughed a lot tonight.

-joshua

monday night

all these weeks i have been picturing a time far down the road when the therapists put gen between parallel bars and had her balance. i was so surprised and pleased when claud (the french-canadian woman who is gen's physical therapist) asked if she wanted to try the parallel bars today. gen said yes. she had already been in the standing frame, and we wheeled her right over to the other apparatus. we held her arms and feet in place, and claud lifted her with the help of the occupational therapist. gen had to straighten her torso and hold her head up. we were supporting her and she was helping with her hands and arms on the bars. it was extremely hard work, but she was happy to try it. she gets to try another new exercise tomorrow, and we'll report on that when we see it. speech therapy came as soon as she was back in the room from pt. she worked on tongue movement and the speech valve. gen is practicing moving her tongue up, right, left, and out. all of these movements are necessary for speech and for eating food. she said the things she is doing are getting easier. we thank you for your prayers and continued encouragement.

susan

sunday evening

we had a pretty tame day. gen did get up in the cardiac chair for about an hour. we worked on some mouthing excercises. she had her hands and arms worked out. randi redid gen's nails, and they look great. gen says she "had fun" today. she wanted me to let everyone know that she hasn't had her trach tube suctioned out in 24 hours. this means that her secretions are lessening. she told me that her swallowing is becoming more spontaneous.

-joshua

b-a-bay, b-e-bee, b-i-bickey-bye, b-o-bow...

gen had a good day today. dr terry was in this morning and saw her wiggle her toes. he asked her to squeeze his hand and she did. he had to pry his fingers loose from her grip. I reminded him that he didn't tell her to let go, and he laughed. he okayed a change in feeding schedule for her. she'll still get 6 meals a day, but they will be at 3-hour intervals from 7am till 10pm, instead of every 4 hours day or night. this will put her on a schedule more like the rest of us who (at least theoretically) stop eating at night. some new things she is doing today: moving her right knee, making sound through her trach tube even without the speaking valve in, and moving her lips to form words using all the different lip-teeth-tongue variations. it might seem weird for her to practice mouthing words, but she has to relearn all the mechanics of speaking. she started with opening her mouth, then unclenching her teeth, then moving her tongue and moving her jaw. now she is working on making words. she has mastered "w" and "m", is getting better at "s" and "d", and still has work to do on "f" and "th" and "e" which seem to be the hardest. just for fun, pretend that you don't know how to talk, and really pay attention to all the different contortions your face goes through to speak. it's amazing. gen's attitude is great, as it always has been. she is still the genevieve we know and love. she has a great sense of humor (she even did harpo marx's gookie face this evening while we were all sitting around quoting marx brothers movies.) it is my turn to stay the night here. josh and leighton and randi have all left for the night. thank you all for your prayers and care for us.

susan.

gen had her swallow evaluation today. the speech therapist stuck a camera up her nose and down into her throat. her swallow is extremely good, they say. it's in better shape than they expected. gen is getting better at mouthing words. pt went well today. gen had a good stretch to her sidewhile sitting. she leaned on her elbow. when sitting back up from the lean, she helped push herself up.
-joshua

thursday night

gen had a good day today. she got to hear her voice again in speech therapy. they let me pick a song off their list for us to sing, and i chose "row, row, row your boat." gen kept up with most of the words, getting voice out with them pretty well. she is not so much singing as making sound in conjunction with mouth movement. i was happy to hear her voice "life is but a dream" and then cry for joy. the room was lined with nurses waiting to hear her talk. they've been so eager for this to happen. everyone wanted to be the first to hear her. in physical therapy we stayed in her room and worked on balance and stretching and head movements. the occupational therapist is on vacation, and her replacement didn't make it to the session, so we just worked with the physical therapist. during the afternoon, gen moved her feet and toes for various nurses. she also squeezed josh's hand twice with her right hand. she did this without moving her whole arm, which she usually does with hand movement. we think she is getting more control over these motions, and that is so good for her to feel. while we see how much she can do now that she could not do three weeks ago or even last week, she sometimes gets sad knowing what she expects to do and seeing how hard it is even to move a toe. we are so thankful for all the people who are praying for her and encouraging her in so many ways. god is good and we are blessed indeed.

susan and josh and sue

wednesday evening

dr. terry came in today while gen was in the cardiac chair. he changed her trach tube. it is smaller and "cuffless." speech therapy worked with gen directly after the trach change. we got to hear her voice. we heard her cry (joyful). we heard her laugh. gen tolerated the speaking valve for about 15 minutes straight. dr. terry and the speech therapists believe she won't need the trach for too much longer. they will be doing a swallow evaluation soon. as soon as she can swallow and/or cough out her secretions on her own, the trach won't be needed. for pt, we did the same as yesterday... dressed her and put her in the standing frame. this time gen's muscles were really tense, causing her feet to turn. this was painful for her, so we did two standing sessions of five minutes apiece. speech therapy came back again in the afternoon and worked with gen's voice again. she is getting more control over her breath and is directing it through her mouth and nose better with each try. it was a wonderful moment when we all heard her voice again. we are thankful for blessings every day.

joshua and susan and sue

tuesday evening

gen was in the cardiac chair this morning. she looked at me with a frown. i asked her if she needed something. she spelled "entertain me." speech therapy didn't come at the scheduled time today. we thought gen would have her new trach tube put in sometime today. it wasn't. physical therapy came at 2:30pm. we put some real clothes on gen and put her in a wheelchair. we took her to the physical therapy wing of the hospital. she was put into a "standing frame." they sat her down in this contraption, strapped her in, and pumped her into a standing position. she was in the frame for ten minutes. she got to look at herself in a mirror while standing. when she saw herself, she immediately corrected her head so it was centered. i think she doesn't realize how far to the right her neck hangs. speech therapy came at 4pm. during the mouthing words part of therapy, we sang/mouthed "twinkle, twinkle." gen did really well on the "how i wonder what you are" part. we watched animal planet most of the day. we watched "house" just before bed. on tonight's episode, there was a semi-nude shower scene, house took lsd, and house commissioned a prostitute. we think the show is going to hell in a handbasket.

-joshua and susan

monday evening

first things first. jenny... gen says "happy birthday!"

dr. terry came by this morning. he said gen is making great progress. he seems thrilled. he asked her to wiggle her toes. her right foot moved. he asked again and she did it again. she sat in the cardiac chair after that. dr. terry ordered a smaller trach tube for gen. we think it will allow her to get more air through her throat and mouth. it will also let her swallow better. she had a good workout with the pt today. she told me that its getting easier to hold her head to the center. speech therapy came in late today. they worked with the speaking valve and with mouthing words. gen is fighting the sleeping pills so she can watch seinfeld.

-joshua

Susan here. All the weekend visitors have headed home and Gen is tucked into bed for the night. She didn't do much today, since it is a weekend. She had me read to her from the Psalms this morning. We got though the first twenty of them. We cried along with King David, and we praised God with him too. We thought of many things to thank God for, and we determined to think on things that are true and honest and lovely and pure, as we are instructed to do in Philippians. The God of peace is with us. Mid-morning, Gen got into the chair again. She was already tired, and didn't do any exercises while in the chair. She held her head up, which was work enough. She was able to move her arms for the doctor who was doing rounds. Sometimes they come in and ask her to move her hand or foot, and then don't give her time to make it happen. That is frustrating for me seeing them be impatient, and I believe it is frustrating for Gen who is trying her hardest to do something and then it is all for nothing when they leave so quickly. I was happy for her that she got her arms to move when he asked her to. The rest of the day was spent talking with company and going through all the usual procedures (vital signs checked every two hours, respiratory therapists every four hours, medication throughout the day, feedings every four hours, etc, etc.) A quiet day, and there is nothing wrong with that. Thank you for your prayers and thoughts.

Susan for the family.

Saturday Evening

Gen was in a very good mood today. It's a weekend again, so there wasn't much activity with the nurses or therapists. First thing when Randi and I got here, Gen showed us the shoulder shrug and opened her mouth for us. And she yawned a big yawn not too long ago.
We talked to her a lot and we all had a good laugh. Then we watched "Cops" on TV and had another good laugh. There's nothing funnier than drunk roudy crazy guys running away from the law with handcuffs still on. It's only funny on TV, at a safe distance. Not in real life.
Genevieve says "Hi" to everyone reading the blog.
Sorry this update isn't as long or informative as the ones that Mom and Josh write.
Thank you all for reading and responding. Gen enjoys reading all of your posts.
- Leighton

friday evening

today's schedule was back to normal. gen got in the cardiac chair around 10am. she had speech therapy while in the chair. she worked with the speaking valve and with mouthing words. she is getting better at mouthing, especially with hard vowels. she went back to bed at 12pm. physical therapy came about 3pm. they held her in a standing position again. her neck muscles are doing better. she found center with her head all on her own. the pt had her practice sitting again, and she did well with that. they only tried one new thing. the pt leaned her forward in a sitting position and had her pull herself up and back so she would fall backwards into the occupational therapist's arms. she did this five times.

-joshua and susan

it serves me right

the day after i write about the "routine," we have an unorganized day. gen got up in the cardiac chair this morning. speech therapy did not come as scheduled. the pt came at the usual time. gen balanced herself sitting up for three minutes today. she started to fall forward four or five times but straightened herself on her own. she told us that she was too tired to stand up. this was okay with the pt as she was tired, too (she's a triathalete who is competing every weekend). earlier this morning, gen told us that she did not want to go outside. she said it was too much work to do right after physical therapy. needless to say, we didn't go outside. the pt talked about maybe getting her in a wheelchair earlier in the day. the speech therapist came as soon as physical therapy was over. gen did all the usual exercises and then the therapist suggested singing. gen's lips mouthed many of the words to some easy children's songs (used in speech therapy because they are so familiar). she didn't mouth all the words, but the therapist was thrilled to see her "singing along" even if the movements were small. this evening gen was working at moving her legs, and she actually pressed down with her feet. we could see her legs move and feel the muscles in her ankles working. we know that God is in control, and we thank him for blessings every day. gen had more company from back home today (momo and claire) and she wanted to tell them about "the nurse with pinch," after which she had a good laugh.

-susan and joshua

wednesday evening

we are starting to get into the routine: in the cardiac chair at 10am, speech therapy, out at 12pm, rest, physical therapy at
2:30pm, rest. speech therapy went well today. gen had her mouth brushed with apple juice. she worked on swallowing, opening her mouth, breathing. she moved her tongue a little from side to side, and after the therapist left, she stuck her tongue out to the edge of her teeth. this was not a rude comment, only something she was to be working on. she also moved her lower jaw from side to side...another breakthrough. she worked with the speaking valve. today they put a little mirror in front of her mouth and nose, so we can tell when she is breathing through them. most of the air came through her nose, but each time we block her trach with the valve, a little more air than last time sneaks out. the physical therapist had gen hold herself up in a sitting position again today. this time she did it for one minute and twenty seconds. gen even started to fall forward a few times, but managed to straighten herself out. we took gen outside again. today we sat under a tree near a fountain. i can tell that gen is really missing summer. she yawned while outside, and we heard her make the yawn sound.

gen can receive flowers, cards, balloons, etc...

Genevieve Moore
c/o KU Medical Center
3901 Rainbow Blvd.
Kansas City, Kansas 66160

pale rider

gen had a big, big day today. she sat in the chair for two hours, and had speech therapy most of that time. the therapist put orange juice on a toothbrush and gave gen a different taste and texture sensation from the usual lemon on a swab. gen liked it very much and opened her mouth better than ever. she got out a squeak with the speech valve today. at the end of speech therapy she got back into bed, and had some visitors from back home to see. she got in a little nap before physical therapy started, and that's when the fun really began. the pt put gen in a sitting position on the side of the bed, as usual. she then asked gen to hold herself up. gen held herself up twice, once for thirty seconds. when that was done, the pt put gen in a wheelchair. we got to take her outside. she hasn't been out in almost 4 weeks. gen really enjoyed the 30 minutes outside, and we hope to get her out everyday(or at least every other day). she was very happy all evening, and she laughed constantly until falling asleep.

-susan and joshua

Ahem

This is Susan filling in for Josh tonight. Gen had a busy day since it is a weekday again. Doing simple things like holding her head up straight, turning her head from right to left, sitting up instead of lying down all require supreme effort on her part. Today she sat for more than an hour in the cardiac chair (we've gotten no good explanation for that name). Speech therapy was supposed to come work with her while she was up, but they got called away. She napped and then had physical therapy in the afternoon. They worked her arms and shoulders and had her lean on her left elbow trying to straighten her back.
She has been favoring her right side since the stroke, and she tends to lean to the right and keep her head turned that way. The highlight of physical therapy was standing up again. It took only two people to keep her upright today, after Josh got her feet straightened out and heels down on the ground. She stood (with the aforementioned help) for three minutes. She got up again for a little while, but her feet hurt and she didn't stay up long. As soon as those two therapists left, speech therapy was here. They had her work with the speaking valve on the trach tube again. This time they had her clear her throat with the valve in place, and we all heard her voice clearing her throat. The other new thing she did today was to shrug her shoulders and move her elbows out. She did both of those on her own, and when I asked if she did them on purpose she said yes. So I said, "do it again" and she did. She is sleeping now, worn out from the exertion. I think how easy it is for me to stand and walk, to talk and wave and carry something all at the same time. Gen has to concentrate on each task like opening her mouth for the therapist or holding up her head. She actually multi-tasked today, doing both of those and answering a question with her eye-blinks at the same time. Now I've written too much, but Gen asked me to say something to everyone. She said thanks for the cards and balloons and flowers and thoughts and prayers. We all thank you for praying and encouraging and communicating so faithfully.

sunday evening

gen had a couple of new movements today. we saw her shrug her shoulders, and a nurse told us that she felt gen move her foot. gen sat in the cardiac chair in an upright position today. she had a really good neck workout. she held her head up all by herself for the better part of an hour. we worked on mouth movements while in the chair. we also worked on hand movements. gen's coughs and swallows are getting much stronger.

Black Coffee

This is Leighton from the hospital, Saturday evening. Gen did well today. I got to see the head nodding (yes and no) and some arm movement with my very own two eyes and it was great. She's doing very good and getting stronger. No therapists were in today because it's the weekend. Well, the respiratory therapist did suction some, but they didn't work her out like they do through the week. Mom, Josh and Randi worked with her hands and feet.
She was thirsty again today, and Josh asked her if she wanted coffee. She indicated that she would like some, and so they asked the nurse. The nurse said as long as it wasn't hot, she could have some coffee, given the same way as the water has been given, on a swab type thing that they put in her mouth. I think she was happy to have some coffee again.
The rest of the day we watched TV and talked. Gen got tired a little early, because it's been a long week, and now she is sleeping.
Randi painted her toenails and fingernails again, and put some fun sea-creature stickers on them.
That's about it for today.
thanks for your prayers.

friday evening

dr. terry came by today. he took gen off the iv. he said she is making a lot more progress than he thought she would at this point and that her "continual progress" is a good sign. speech therapy went well today. we didn't get any sounds, but gen's mouth muscles are getting stronger. she is breathing better with the speaking valve than she was yesterday. physical therapy also went well today. they sat gen up on the bed today. her neck muscles are getting stronger. she held her head up higher and longer than she has before. also today for the first time, gen said she was thirsty. we used swabs dipped in water to let her have a drink. she can swallow just fine, but her jaw and lip movement is limited. it was nice to have her spell something so simple and normal..."I'm thirsty." we take so much for granted, don't we?

-joshua and susan

out standing in her field

gen had another big day today. she sat in the chair for two hours, the last whole hour devoted to speech therapy too. she is getting her breathing under control when she has the speaking valve in her trach tube. there is still no audible voice, but the speech therapist said that is because of the liquid in the back of her throat on top of the vocal cords. we try to get her throat cleared out by respiratory therapy just before her speech work, but plans often go awry. sometimes respiratory can't get here in time, and sometimes speech gets called away when she is cleared, and by the time they come back she is rattling again. oh well, she did have a good session this morning. this afternoon she had physical and occupational therapy, both therapists coming together to work on things with her together. they asked her if she was a risk taker, and she nodded "yes." they stood her up, one holding her around the underarms, one holding up her back. Josh was holding her feet flat on the floor (they kept drawing up and turning sideways, because she can't control them). I was holding her head straight until she got it under control, which she did. she was pulled into a standing position three times, each time holding for a little longer. she was exhausted after her workouts, and she rested much of the rest of the day. she did work on hand movement with me a little this afternoon. she made a light fist around my finger and pulled my hand several inches forward. it is hard to tell what is reflex and what is voluntary, so we ask her. she tells us frankly if she did not do something on purpose, if it just happened. so we believe her when she tells us another movement is something she did do on purpose. these hand movements yesterday and today were voluntary according to gen, and we believe her.

-susan and josh

the think system

gen asked to use the computer again today, but she wanted to use the keyboard herself this time. she let josh move her right hand to type "i can do this" as she blinked to choose the letters. then she asked to type by herself. for about 12 lines she just rested on the letter h, like this: hhhhhhhhhhhhhhhh. that just happened to be the letter her hand was resting on. then (with josh encouraging her) she concentrated on her hand and lifted it enough to quit typing hhhhh. she looked at her hand for a long time and then moved it slightly to type the letter vvvvvvvv. again probably no reason for that letter. then she moved it slightly to the left and let it rest. she moved it from right to left an inch or so five or six times. we were all excited. when the nurse came in to check her vital signs, she said she thought she had seen gen move her arm when she was getting her blood pressure checked. so we showed her what gen was doing now. we put her right hand on a dry erase board and told her to think about moving her hand again. this time she moved it to the left about six or seven inches. i have to admit i was praying the whole time that God would give her something to give her hope and something to keep trying for. i believe prayer was answered here today.

susan and josh and sue

do you want fries with that shake?

gen shook her head "no" today. it's not a very strong shake, but with a little practice, she'll get it. gen nodded her head many times today. it gets easier every time she does it. she is now off heparin(blood thinner). she is taking coumadin, which is a long-term blood thinner. the respiratory therapist took her off all extra oxygen today too. due to the holiday, the speech, physical and occupational therapists were not here. we did a few excercises with her, and plan to hit it hard tomorrow. genevieve woke up at 2:30 am, asking when the "monk" marathon on usa was going to start. it started at 5:30 am, and we watched it until 10 pm. it's one of our favorite tv shows.

a nod is as good as a wink

today was a big day for gen (aren't they all). the speech therapist saw gen today. she was asking gen a question and, instead of blinking yes, gen nodded her head. she nodded "yes" numerous times today. she told us she didn't want to use the head nod as her primary communication because it is hard work. the therapist tried a "speaking valve" on gen's trach tube. we heard a tiny squeak or two, but nothing major. the therapist said that gen's vocal cords are covered with secretions, so we shouldn't expect to hear much until that clears up. the physical and occupational therapists came and worked with gen today, too. they sat her on the edge of the bed. they leaned her forward and asked her to lift her body up. she did it with assistance. her muscles are getting stronger every day. as always, her therapists are thrilled with her progress, but no one is as thrilled with her progress as gen is herself. she still laughs and smiles a lot, and she had a lot to laugh and smile about today.

-joshua and susan

-gen informed me that "the nurse who pinched me" was what she meant (not "the nurse with pinch"). she also informed me that it was my fault that the message got messed up. -joshua

the nurse with pinch

gen spelled "hello" to everyone reading this!

gen asked to start working on physical therapy bright and early this morning. we worked with her arms and hands, head and face. she sat in the cardiac chair for about an hour, then went back to bed for a well-deserved rest. gen laughed a lot today. i guess we were really funny. yesterday, susan and i got a little worried because gen's face began twitching. last night, we asked the nurse to take a look at her. she did and told us that she knew of a test that might help figure out what the twitching was. she told us she was going to pinch gen. susan asked her if that was going to tell us anything about gen's face. the nurse said yes. she then pinched right on the right armpit. susan and i were shocked. gen sat up(reflexive movement), giving the nurse a look that said "what the hell..." then the nurse pinched on the left armpit. same reaction. after the nurse left, susan and i were talking to gen about what an idiot she was(the nurse). since then, gen laughs every time we mention the subject or the nurse. today she spelled to us that she wanted us to "tell lei and randi" about "the nurse with pinch."

-joshua

nice work if you can get it

gen sat in a cardiac chair for two hours this afternoon. this is a very strenuous workout for her muscles. she absolutely hates being in the chair but patiently puts up with it because she knows it's good for her. gen held her head up again while in the chair. we offerred her a brace for neck support, but she insisted on holding her own for the first hour. she also insisted that we work with her hands and arms. the physical therapist taught us some basic excercises and instructed us to encourage voluntary movement. gen had a few visitors today. she also got some balloons and a plant. this has been a big week for gen and, because there are fewer staff members in and out of her room, she fell asleep early.
thank you for your continued support.

-joshua and susan