December 31, 2005 - Early Morning

The last day of 2005! Yesterday was another good day with Amanda. It's another long one, so sit back. She was quite alert for Dacia at breakfast although she continues to have busy hands (she doesn't pull on the bandage near her throat quite so much anymore, but she is constantly reaching for her eye. You have to have quick reflexes to catch her hands.) She had a busy day of therapy before the holiday weekend. The biggest news of the day is that she traded in her moon boots (boots that she had to wear in bed to keep her muscles stretched out) for a walker! We were given lessons in the afternoon on how to help her walk with it. (Her balance is still pretty unsteady and you can't let her walk by herself yet). Since she pushed herself to a standing position yesterday and walked to the bathroom, she wants to be on the go with a lot of regularity. She wants to get out of bed, stand and walk with much more frequency. Other than worrying about her safety (because she is fearless with the walking), we love seeing her up and around.

She had 5 therapy sessions today. She did PT in the morning (she walked on the bars for a bit before she decided she was bored with that and wanted to walk around the room. So the therapist, Brenda and Amanda walked across the room (it's about 50 feet?) to the xmas tree and back again. They did some standing breaks and one sitting break at the tree. During a standing break, Mandy started swaying/dancing to a song that Brenda was singing to her and she was humming.

Her second session was group therapy. (They ask all the participants their names, why they're in rehab, how old they are, etc. It's primarily used to orient them to their surroundings and "regular" life again.) She normally falls asleep in group, but there was a short break beforehand, so Brenda wheeled her over to the hospital's Starbucks (there is a tunnel under the street) and picked up some coffee. She refused coffee or tea, but she took a few sips of Brenda's coffee as she was waiting for therapy. (Not sure how much she really enjoyed it since she doesn't like sweets and it was a caramel mocchiatto). Either the walking or the Starbucks helped keep her awake in group therapy. She was attentive but didn't feel like talking until they asked her what her husband's name was. She didn't come up with it, but she had some pretty involved untelligible, emphatic stories about him. LOL

She was pretty exhausted after group and took a very deep nap in her bed. (She needs anywhere from 1-2 naps a day.) She woke up for a visit with Rene. It took her a little while to recognize Rene but she did eventually pick up her name and ask her some questions about her life that showed us that she knew exactly who Rene was. We were able to give her "real" food for lunch. (Some kind friends of Kurt brought us Babe's chicken for dinner the night before. She had already eaten, but we saved some for her for lunch today). She seemed to enjoy the break from hospital food. April stopped by for a visit after lunch and both Rene and April had the opportunity to watch Amanda's afternoon PT session where she used a walker to walk around the room. (Her PT's sessions are the most amazing things to watch.) She loves to people watch in the busy areas, particularly in the PT room. At one point, as Brenda was walking with her, Amanda pointed out a group of some guys that were standing and working near the cushions. She said to Brenda,"See that group of guys? Gonna pick them up?" (cracking up both her therapist and Brenda). Brenda told her, "Not today mama, we got other things going on."

Afterwards we went to Speech therapy with Emily. Emily is a young 20's blonde that smiles a lot. Mandy really liked her. (She does much better for the therapists she likes. We know it's going to be a good session when she turns to us and says,"Oh, I love her." Or "Oh, she's cute!"). She was asked to identify objects in pictures, which she did well for a while (about 5 pictures) and then grew tired of it. She turned to Brenda on the 5th picture and said under her breath,"This is completely worthless". So Emily and Brenda explained to her that she had hurt her brain and all of these "silly" games were to help her brain heal and become stronger. Mandy took it all in, nodded and responded that is was to help "her mouth get stronger". Wahoo! She seemed to comprehend what we were saying and perked back up again when Emily switched her to reading words off of cards (Brenda told her that she tries to read words off of everything she sees, even condiment packages. Since the primary goal at this point is to increase her attention span, they'll switch tasks if they think they can get her to focus for longer.) She did very well with reading the words off the cards and only missed a few of them.

Then it was time for the dreaded OT session which she absolutely refused to participate in. It's at the end of the day when she's been working hard and we believe that she thinks it's silly (stacking blocks, pegs, writing, etc). We got her to do the arm cycle, but she wasn't having any of the other activities. You know you're in trouble when she leans back in her chair, folds her arms, purses her lips and gives you the hairy eyeball.

The most touching thing that happened (and we hope Kurt doesn't mind us sharing it) was when Kurt arrived late in the afternoon. He had spent the day looking at group homes for her and when he arrived back at Baylor he was pretty spent and exhausted. As he kneeled down to say hello to her, he had tears in his eyes. (These days can be overwhelming and we've still got a long way to go in front of us). As he was talking to her, she was taking in his emotional state and Brenda noted to Kurt,"She knows you're upset". Mandy looked directly at him and said, "Let's go". Brenda asked her,"You want to use your walker? And show him you can walk up here now?" Mandy responded,"Yeah, let's go." We believe that she was trying to cheer him up by showing him how well she was doing. She's not always getting the right words out and she gets tired fast, but there's an awful lot going on up there.

She was pretty spunky the rest of the night. When Brenda would tell her that they couldn't take her walker into a narrow space (i.e. the shower, behind the nurses station), Mandy would retort,"Oh yeah, let's go." and nod her head, with a little smirk on her face. When Brenda would shake her head no and explain why they couldn't do it, Mandy lifted her chin, raised her eyebrows and gave her the hairy eyeball, as if to say,"oh yeah? We'll just see about that -" until she made Brenda laugh and herself smile. Every day she takes another step back towards in the most amazing ways possible. Keep on keepin' on mama - you are rockin' our worlds.

PS We got internet in her room the day before yesterday! So we've been showing her the blog and the comments. Not sure how much she's comprehending, but we're assuming she's understanding it all until we hear otherwise. So keep leaving those comments! She's getting to read them herself now!

December 30, 2005 - Friday

We're having problems with pics again, so we're going to post without a pics. It's a long one though, so it's just as well that the pics aren't working. It was an amazing day in Amanda-land. We'll start with the biggest news first. Around mid-afternoon, Amanda told Brenda and Kurt that she needed to use the restroom. As Kurt went to prepare the bathroom for her, Brenda began preparing her wheelchair. While Brenda was preparing her wheelchair, Amanda put her hands on her wheelchair and pulled herself to a standing position and stood there using Brenda for balance(despite Brenda asking her to wait for Kurt!). The nurse came over and helped to support her and continuing to use Brenda for balance, Amanda slowly walked herself the 20 feet from her bed to the bathroom! As they rounded the corner, Brenda told Kurt not to come out of the bathroom too fast because there was a surprise waiting for him. As he stepped out of the bathroom, he saw the amazing sight of his wife walking towards him. He grinned from ear to ear. Later, when we called Ron to share the experience with him, Amanda was able to recall her amazing feat and repeat it back to Ron in response to his questions (a coherent present-moment conversation!). Tears of joy!

If that weren't enough, we have lots of other Amandisms from the day to share. Her morning was kind of sleepy (she kept falling asleep in her neuro psychology group session), but she really perked up in the afternoon. Good thing Kurt got Baylor to change more of her therapy sessions to the afternoon (when she's been more alert) because she really showed them what she was made of today.

The first Amandism needs some background. There are 4 beds in her room. When she arrived there was a 20ish guy there named Matt. Yesterday morning, they moved him to another room, but no one thought to tell Amanda where he was going (being with her is pretty intense, you forget these things sometimes). When she was wheeled to group therapy session yesterday morning (which Matt attends), Kurt put her beside Matt and said,"I'm going to put you right next Matt". She was pretty sleepy and didn't comment on it. Later at lunch, she was facing his empty bed and looking at it. She turned to Brenda and said,"He didn't die?". It took Brenda a minute to put all the pieces together and realize that Amanda had thought Matt had left because he had died (remember she was in an ICU for about 6 weeks and saw more than we ever did because we weren't told when someone didn't make it and we have no way of knowing what she heard or saw during that time). Because she thought he had died, Amanda must have been surprised to see Matt in group therapy. It was a pretty complex and connected sequence of connections for our girl to make! Brenda assured her that "No, baby. Matt just graduated to his own room and when you can answer the questions like him, you'll graduate too." Kurt also reassured her, "No one here is going to die. Everyone is here to get better." She must have been thinking about this a lot because 30 minutes later, as she was eating her lunch, the hospital staff brought a new woman into the room. The new woman was much like Amanda 3 weeks ago - still pretty comatose. They began orienting the woman to the room (explaining to her where she was, what they were there to do, etc). Mandy paused her eating, looked at us, gestured behind her to the bed and told us,"We have to encourage her." That's our girl.

The rest of the Amandisms are shorter but there are a lot of them. Kurt was flipping through her CD case looking for some music and paused on the Elton John CD. Amanda (who works really hard to try and read all the words she sees) said "Elton John". Kurt asked her,"Do you want to listen to Elton John?". She shook her head,"No, I want to listen to my brother." He played her the guitar and sang to her every day he was here and she loved it. Her music retention is pretty amazing.

She did very well in all of her afternoon therapies (one on one neuro where she had to pick out the differences between pictures, speech where she was asked to identify items from pictures, identify people in the room and repeat phrases, and OT which she doesn't care for unless it's in the kitchen, where she easily took to the hand bicycle). However, she had busy hands all day. It took every moment of our attention and sometimes all of our strength to pull her hands away from her the bandages on her throat (where the trach was removed) and her eye. She shocked and surprised the speech therapist when she spontaneously and sternly said, "Brenda!" after Brenda grabbed her hand from the throat bandage once again during therapy. (Amanda had refused to introduce Brenda to the speech therapist earlier. Sometimes she can be a stubborn little mule. She does things in her own good time.) Later, back in her room, when Brenda reached across her and grabbed her hand again away from her eye bandage, Amanda turned to her and said,"Don't be nasty". Brenda said,"I'm not being nasty baby, but I'm not going to let you hurt yourself" and Amanda replied,"It's Kurt's fault". When Brenda asked why that was, Amanda said,"He doesn't love me". LOL She's returning to her old self. [Lest you think we're being mean re: the bandages. The only other alternative is to restrain her hands, which we don't want to do. We give her freedom of movement when we're there with her and just watch her carefully to make sure she doesn't pick at her bandages or tubes. But it's quite the job as she is the master of distraction. She will hold your hand with one hand and reach with the other hoping that you don't notice it. Even her therapists have a hard time keeping up with it.]

She's working really hard and we're all so amazingly proud of her!

December 29, 2005 - Mid-Morning

Mandy had another good day yesterday and made us all smile quite a bit. Her trach was removed this morning (they left it in overnight just to make sure that her night after the surgery was o.k.) so we don't have to worry about her yanking on that anymore! Her eye surgery went very well and was over quickly. The best part is that the stitches will dissolve in about 3 weeks which is just the amount of time she needs the additional protection. She keeps trying to remove the bandage so we have to play hand police a good bit, but she's getting better as she gets used to it.

We had lots of good Mandyisms. They normally don't allow family into the post-op, but she was pretty agitated waking up (which is more like the Mandy we know!) so they called Kurt and told us to send someone in. When Brenda and Kevin walked into recovery, she immediately began to calm down, but she looked directly at them and said (with a definite royal attitude),"I've been sitting here for awhile".

When they got her back to the hospital recovery room, they played her some Eagles and John Mellencamp to soothe her and she sang along and hummed with the songs. At one point she lifted up Kurt's shirt, rubbed his buddha belly and said,"Baby, you're fat." Luckily, she also told Brenda later in the day that "He was a good boy."

As the boys (Kurt, Kevin and the transportation guy, Matt) moved her from the bed to the gurney to take her back to rehab, they forgot to do the 3 count to let her know that they were moving her which caused her to say (as they put her on the gurney),"What the hell?". She then turned to Brenda and said,"It's always a group of guys."

She's been more sleepy today (not unreasonable the day after surgery) but is going to her therapies, feeding herself and chatting up a storm. We're taking notes and should have lots to share tomorrow -

December 27, 2005 - Evening

Today was another good day of progression in Amanda land (although bitter sweet because Ron had to head back for home). She had a busy day of occupational, physical, speech, and neuropsychology therapy and she continued to progress on all fronts.

The biggest progression was in physical therapy as Amanda climbed stairs for the first time. (Assisted by her PT of course!) And not to brag (but of course we will) - she skipped right over the phase of half stepping up the stairs (where you bring each foot to a step before progressing to the next) and went right to the full one foot per step that we're all so familiar with. She still has lots more room to grow; she still needs a lot of assistance using her walker and she gets tired very quickly - but the stairs were a big step forward! She also answered about 50% of the questions in neuropsychology accurately (she was able to respond to the doctor's questions about her first name, her birthday, the city she was currently in, and the city she lived in). She did think the month was October, but given that her accident was in October, this isn't unexpected.

Amanda was more on today than she has been in the past few days and spent some of her "on" moments giving Kurt a hard time (more like her normal self!). He attended speech therapy with her and when she was asked what his name was, she refused to answer. At his prompting,"It's o.k. to tell them what you call me honey..". She told her therapist he was "a son of a b-". Later, as she was eating dinner, he left the room. The princess asked Brenda where he went and on being told that he had left to get her some ice tea, Mandy shook her head at Brenda and told her that Kurt was "useless". She also told one of the nurses later that he was a "d-head". Luckily, Kurt reads all of this as progressions back to her normal self and it just makes him smile from ear to ear. (Of course, the sweet kisses she gives him and the way she constantly reaches for him and looks to him for so many things does really balance it all out.)

She is scheduled to have the trach removed tomorrow (we know she'll be thrilled with that since she spends so much time trying to pull it out!) In addition, they'll be putting a few stitches in her left eye to close the lid for a month or so in order to allow the cornea to heal. It's been slower to heal and been getting quite the work out as Mandy tries to recognize shapes, figures, and objects. The expectation is that this will keep the cornea well lubricated and rested while the body does the hard work of healing it.

December 26, 2005 - Late Evening

Happy holidays everyone! Our apologies for the late post, but with the craziness of the holiday we hope everyone understands. Brenda arrived yesterday and was excited to see the dramatic change in Amanda from 3 weeks ago. Although the princess didn't call her by name yesterday, Amanda made a specific reference to some of their past souvenir collecting that let us know that she knew exactly who Brenda was. The princess' voice is becoming more audible and clear and we are able to hear most of what she says. However, her dictionary is pretty scrambled right now (words are not properly matched to their definitions and some words appear to be new creations altogether) so much of what she says doesn't make a lot of sense. But the times when it's clear and she gets the message across are stunning and we see glimpses of our sweet funny girl. Yesterday, Mandy gestured towards Ron/Kurt, turned to Brenda and said,"See what I have to put up with?". Indeed.

The biggest event of the day was that we were able to bring Simone (the favorite of her 4 cats) to the rehab center. It was almost as if someone flipped a switch to Mandy's 'on' button for a little while. Her voice became the normal "Amanda" tone as she told Simone to "hey baby girl". She spent about an hour with Simone this afternoon and we all believe that the visit was fantastically beneficial for Mandy. (As for Simone, we know she wasn't wild about the car ride, but she purred like crazy as soon as her 'mommy' began petting her and she kept it up for the entire visit.)

Moments of a certain degree of clarity are still pretty rare though. In a fully 10 hour plus day, there may be about 5 moments or exchanges where she seems "on". The concepts she is able to grasp the most quickly and respond to appropriately are generally very simple and straight-forward (i.e. are you tired? do you want to go outside?) Her attention span is about 45 seconds, but improving with each passing day. She has some better days than others but we're happy to report that both her mental and physical abilities continue to be progressing forward with each passing day.

December 24, 2005 - Late Morning

Yesterday was another good day in Amanda-land. She used the walker for the first time. She not great with it yet, but she's learning and improving. She refused to use the "bands" her PT gave her to work with until her big brother pressured her into it with Kurt watching on. She wasn't very happy about it, but she did it. She shot Ron a very dirty look before she reluctantly pulled on the bands per the PT's instructions. (Have we mentioned yet that she appears to hate PT? Physical exertion has never been our princess' favorite thing.) Her attention span is still about 45 seconds so everything is still a little bit of struggle but she's continuing to make those small steps forward.

Brenda is arriving tomorrow and is looking forward to not only seeing the many improvements that Amanda has made, but meeting so many of the Dallas folks that have been taking such great care of Amanda and making so many personal sacrifices for her. In the meantime, happy holidays to everyone reading the blog today!

December 23, 2005 - Friday

Blogger is having some problems today, so we won't be able to post a picture. But it looks like we're o.k. with text, so here goes. Day 2 of Ron's visit was yesterday and it was a good day. About mid-way through her lunch, she asked for paper. He responded that he would get her some as soon as she had finished her lunch, so she continued eating without comment. When she was finished, she looked directly at him and said "Paper!". (He obviously didn't understand that it had been an imperial command not to be forgotten.) After getting her the paper, it seemed like she was trying to write his name (she hasn't called him by name yet) because the first letter was an "R". Later, during physical therapy as she was "walking" with the bars, she stopped mid-way, looked at him and said "Michigan State University!" [For those who don't know, he works there - so she had obviously been busy trying to put all the pieces together in her mind]. She did very well with her walking and it continues to improve. After a brief rest back in her room, she demanded a "walk!" so she was taken for a roll before she fell asleep in her chair back in her room. She is also scheduled for the ear, nose, throat doctor in the next few days to examine her trach and determine if it can come out since she is doing so well swallowing at this point. We all have our fingers crossed!

IMPORTANT POST FOR DALLAS VISITORS

We had our weekly report from Baylor and we want to provide some feedback. The staff feels that we may be overwhelming her and impeding her progress with all of our love and visits. Do not feel bad. Do not feel guilty. Do not stop visiting. Sometimes our instincts lead us astray and we're all learning as we go through this. The thing to do is become more knowledgable about what we can do to help. Here's what everyone needs to do:

1) Baylor provided us with a chapter on Cognitive, Behavioral and Physical Problems following Brain Injury so that we can better help her improve. Each visitor will be sent a PDF copy of this file when they reserve a visitation slot. It is required reading before you visit. It gives you lots of information about brain injuries and the kinds of things you should do and avoid.

2) We've updated the Visit Blog once again with the most important items to keep in mind. Please read them thoroughly and Know Before You Go.

Thanks team! We're going to get her through this yet!

December 22, 2005 - Early Morning

Ron arrived in Dallas yesterday and was able to see Mandy again for the first time in 3 weeks. What a difference those 3 weeks have made! When he had to leave, she was comatose. She was not able to speak, hadn't eaten solid food in nearly 2 months, was confined to her bed, and minimally interactive. Three weeks later, she's a new girl. She still has a long way to go, but she is talking a blue streak (o.k., most of it is still not in the present moment and confused, but talking is still talking), interactive and pretty darn mobile compared to where she has been. She hasn't said his name yet, but is treating him like she recognizes him. [In case we haven't mentioned it yet, she definitely knows Kurt and refers to him as "Kurty" quite often.] She is still a bit "child-like" (although the therapists have warned us against treating her like a child, it's important that we still treat her like an adult). Her attention span is extremely short (she takes a few bites of her meals and then you have to feed her the rest) and she has a minimal ability to focus. When Brenda spoke with her on the phone yesterday, she was very attentive to hearing that Brenda was flying in on Xmas and bringing presents, but lost focus as soon as the subject turned away from gifts! LOL She is slowly working her way back to being our funny girl.

Ron spent the day at Baylor going through her therapies with her. Her physical therapist has asked that her release day to the "group home" be pushed back a week so that she can continue working on walking with the princess. The paralysis in her left leg appears to be improving and she wants more time to work on it. The most exciting news is that her PT told Ron that she believes Amanda will be walking in the next week! (Right now she is still getting a lot of assistance from the PT and the bars). She had a few very lucid moments. As Ron was feeding her her dinner yesterday, she stopped, looked straight and him and said,"You know, you really should heat this up." He checked and she was right, her dinner had gotten a little cold. But the best moment of the day was when she, Kurt and Ron went for a roll around the facility. As Ron was pushing her wheelchair from behind, Kurt was walking beside her, she reached up and grabbed Kurt's hand. And for the remainder of the roll, Kurt and Mandy were "walking" hand in hand. Sometimes, it really is the "small" moments that help you keep the faith in her return to us.

And as a side note, we all want to give a big thank you to all of the folks that have been there at her side each day at Baylor. It's a sincere labor of love that's requiring sacrifice on the part of everyone on the team (she's a handful when completely lucid and healthy, imagine what her "busy" nature is right now!) and the love being given is most appreciated by everyone that loves her. May all of that love be returned to you all tenfold.

December 20, 2005 - Mid-Morning

We have some housekeeping items to take care of before we post the update. First, is that we've updated the visit blog. If you are planning on visiting Mandy, please check out the visit blog and read the latest info. (The link is to the right). Second, some folks have expressed interests in having pics posted on the blog of them with the princess (or pics of the princess alone). We'd love to comply. Please send any pics that you have of her with or without you in it to everythingamanda@hotmail.com {NOTE: The only format that the blog accepts is JPEG, so please convert them to that format prior to sending.) And now, on with the update.

This is an excerpt from either Stacey or Lori's visit with the princess late last week (it came from Stacey, but was signed by Lori - so apologies if it's misattributed): "Jessica and I went to visit Amanda yesterday (Thomas Ann was there all day). We were able to take her to a Christmas Party downstairs. Santa was there with his reindeer (real dogs) and Amanda smiled really big when she saw the dogs. She got to hold and pet one of the "reindeer" and have her picture taken with Santa. We listened to some people singing and playing instruments and even some tap dancers! After every performance, the audience would applaud, and Amanda joined right in. After a while, we went back to her room where she kept trying to remove her back brace (she has to wear it whenever she is sitting up in her wheelchair). Thomas Ann told her she had to have it on and could not remove it, so the Princess flipped her off with both hands. LOL She has a long way to go, but she's making some amazing progress. I'm very proud of her."

December 19, 2005 - Early Afternoon

Mandy continues to make slow but steady improvements. Her lucidity is improving and increasing, but most conversations are still confused and out of place. We think that she is replaying old conversations in her head as she is sorting out present and past. Brenda was able to hear her voice on the phone for the first time last night and was thrilled to hear her even if Mandy thought she was "Kathy". (If anyone has any idea who Kathy might be, please let us know. Neither Kurt nor Brenda could figure that one out.) Ron is headed down on Wednesday and plans on bringing the cards per her request. [The beer has been put on hold for a little while.]

Physically she improves each day, but has some paralysis in her left leg. We believe that it's not permanent and is related to the brain injury, but aren't sure of that yet. Even though it's hard, it's important that she continue to push herself and we've been encouraging her to do just that to the limits of her ability. Kevin got to watch her walk the full distance requested by her PT yesterday (with assistance from PT and the parallel bars of course). She did it in 2 phases about 6 steps each time. She also got to go outside for a short roll around and see a 4-legged member of the family (Gypsy, Kevin's Sheppard). Kevin took the princess back upstairs afterwards and sat looking out the window in the hall for sometime. We've been looking at her scrapbooks with her and it seems to help job her memory a bit.

We're trying to put together some information provided by Baylor to all those who might be visiting her. (Things to do that assist her in the healing process.) We'll be posting the information or a link to it very soon, In them meantime, keep sending those continued healing thoughts her way!

December 18, 2005 - Morning

An excerpt from Lori's visit a few days ago: "When I got there, Amanda's friend, Christine was there. I walked up to Amanda and asked her if she knew who I was. She shook her head yes. I asked her to tell me what my name was. She looked at me for one very serious moment and said 'Yvette'. A little disappointed at first, but thinking more about it, I know that Yvette is a good friend of hers and that she knows I am a good friend of hers. She is still somewhat confused, but is trying to put all the pieces together and is doing a great job. Christine and I were talking about Brinker and Real Estate, and Amanda chimed in "We do not need another restaurant". She is still making us all laugh."

December 16, 2005 - Mid-Morning

The latest on Amanda's progress from Dacia:

"I had a brief visit with Amanda before I went to work this morning. TAnn was there also and told me that earlier in the morning Mandy said TAnn’s name. She was very alert and active this morning and was talking a lot. A couple of times she would even talk with her mouth full of food.

Mandy’s breakfast this morning consisted of pureed scrambled eggs, oatmeal and cranberry juice. Since the solid food at this point is more to get her used to the texture of the food and swallowing, she is still being fed through the feeding tube as well. But at the rate she is going I’m sure that feeding tube will be gone soon. She used a spoon all by herself to eat two bites of the eggs. After that, she wasn’t very interested in feeding herself, but she let TAnn and I feed her. Several times she very daintily wiped her mouth with her napkin.

Mandy had busy hands this morning and was reaching for everything on her tray and kept trying to pull her trach out. For awhile TAnn held her hands while I fed her and at one point Mandy lifted TAnn’s hand up and kissed it. She also told us a couple of times, “this is bulls**t.”

My hair has gotten longer and is cut different than she is used to seeing and she told me, “I like the difference in your hair.” I told her thank you and she responded by saying, “Kurt told me about your hair and he was very disappointed.”

Her speech is still a little difficult to always understand, but her voice is much stronger than it was when she first arrived in Dallas. I am amazed by her progress everytime I see her."

December 15, 2005 - Mid-Day

We thought we'd share some stories kindly sent in by some of Mandy's Dallas visitors.

The following is an excerpt from Jen & Eric: "We visited with Mandy and Kurt on Tuesday evening. Eric created a CD consisting of some easy listening songs especially for Mandy. When "If You Could Read my Mind" by Gordon Lightfoot played, Mandy hummed to the tune. She told Eric she liked "Sailing" by Christopher Cross. We were able to share the news that we are expecting our first baby with Amanda in last Friday's visit. During Tuesday's visit when I showed Amanda my pregnant tummy she asked 'How big is the baby?' We thoroughly enjoyed our visit and are ecstatic about the progress we've seen in Mandy within the past 4 days."

The following is an excerpt from Martha Lee: "Just wanted to let you know how Amanda’s morning was. She has been doing remarkably well in the mornings. This morning we had bananas and a liquid substance ( I am told it is like ensure) for breakfast feed directly into her belly and just right after her bananas she burped, kind of loud, and said “oh excuse me”. The past couple of mornings when I have had the opportunity to be with her, she is always talking about work. Some project or contracts that had to be done.

Then we went downstairs to the 2nd floor for her morning physical therapy sessions where I watched and got to play along with Patty, the Occupational Therapist. Today Patty brought this yellow beach ball with a smiley face on it and wanted Amanda to hold her arms out and catch the ball. She was not ready to do that yet as she was very tired from the night before. From what I understand, Amanda has not been sleeping through the nights very well.

After throwing the ball at Amanda 3 times, and Amanda just not responding; her eyes were about shut ready to go to sleep, Patty threw the ball to me and said “Watch Martha she will catch the ball. Can you catch the ball?” Patty threw the ball to me, but Amanda was still tired with her eyes just about shut and she didn’t respond.

Then I said, while throwing the ball back “See Mandy, it’s a Beach Ball, not a Volley Ball. You can do it!”

Amanda turned her head, opened her eyes, looked straight at me and said “Don’t make fun of me.”

I said “Of course not, sweetie.”

Then Patty threw the ball again and this time, she tried to catch the ball. Then we went to an arm pedal machine and she operated that machine very well. After her upper body workout with Patty she had to go to Group Therapy and I know that she would rather have been sleeping."

December 14, 2005 - Early Afternoon

Kurt met with Baylor for about an hour mid-day today. They've set January 12th as the release date from Baylor. The plan is to send her to a home environment rehab (like a group home) on Jan. 12. She will then spend 2-4 months in the "group home" before she goes back to her own home and transitions to outpatient rehab. The goal is for Baylor to assist her in re-learning how to take care of herself and for her to be able to perform those functions with some proficiency. The home environment rehab will have a nursing aide that is available to assist her as she needs until she is completely independent. She's currently rating as a 4-5 on the Rancho Scale. The good news about her rating is that she's "officially" out of the coma. The less good news is that they don't want to remove her trach just yet as she is still fairly confused and may not be able to assist in her own care by swallowing when needed just yet. [She's refused to respond to her speech therapist at all so far.] The best news of all is that her therapists are talking about getting her back to her "normal" life and even being able to return to work at some point.

Otherwise, she continues to improve at a good steady pace. She now asks the nurse when she needs to use the restroom. (We believe that she even may be using it as an escape when the room gets too loud for her). She does tend to shut down a bit when things are too loud or she gets overstimulated, but the confusion diminishes and she is more clear and responsive when it quiets down. She is smiling regularly at people and appears to be in the "present" for about 5-7 scattered minutes in any one waking hour. Those "present" moments appear to be increasing with some regularity.

December 13, 2005 - Evening

OK - Minions of Amandaland, your pleas for more Amanda, more of the time has been heard by the royal court (and in particular her consort, Kurt). She's had a very busy week since we last updated. She is receiving a shower at least every other day if not more frequently. She is receiving approximately 4 or more therapy sessions a day (occupational, physical, speech, group, and animal to name just a few). They had her standing today in a special chair (to quote her exactly, we understood her to say "standing f-ing sucks") and she even took a few supported steps wtih Kevin looking on. She has been somewhat interactive (picking and choosing her times of course) with visitors. She smiled at a few visitors for the first time this past weekend. She even had the presence of mind to ask about her niece (Ron's daughter). [The first person she asked about!] She was able to visit with Sheri (Kurt and Christine were able to wheel Sheri over through the tunnel) and spent some time patting her hand. We're still not understanding about half of what she's saying, but it's getting clearer and we're seeing steady improvement every day.

We have a special request to make of the Dallas folks. First, thanks for your visits. We know that they help to stimulate her and assist in her recovery. They also help to ease Kurt's mind now that he is unable to be with her every moment; it's good to know that she is surrounded by those that love her when we are unable to be there ourselves. Second, we have one more favor to ask. Because she has so many friends that do not live in the Dallas area and we are unable to be with her 24/7, we need your help keeping all of the kingdom (or is that princessdom?) informed of her progress and notes of your visit. If you can, please note in a comment here or e-mail the royal court at everythingamanda@hotmail.com with any special stories or items of note (we'll consolidate the notes and post them here periodically). Don't assume that someone has already seen or heard what you're experiencing. She's doing new stuff all the time. In addition, funny or sweet stories are especially appreciated as they will make fantastic additions to her yet-to-be-named scrapbook of this whole experience.

We will update again tomorrow afternoon after the family conference.

December 9, 2005 - Mid-Afternoon

OK Dallas peeps - The day you've been waiting for is finally here! The visit sign-up schedule and guidelines can be found at:

http://visitprincessamanda.blogspot.com/

We've also created a permanent link to the right that you can simply double-click. Note that the visit site is being updated by friends and family so be patient if it takes some time for you to get a response. We'll respond as quickly as possible to all requests.

As well, now that our girl has moved into the rehabilitation phase, we will no longer be posting daily updates to this blog. Going forward, we will only be posting once a week (unless there is a significant change). The next big item scheduled to happen will occur next Wednesday when Kurt meets with the therapists for the Family Case Session and they set a general goal date for release back to home. Of course, we'll post here as soon as we have some information from that meeting. Otherwise, no new posts should assume that she is progressing as expected with no major leaps forward or backwards.

December 8, 2005 - Mid-Morning

The princess has gotten comfy in her new castle. They sat her up in a special chair and gave her a shower yesterday. To our surprise and happiness, (unprompted) she grabbed a wash cloth from one of the bars and gave her face a thorough scrubbing. We can't imagine how long she's wanted to do that or how great it must have felt! She's expected to be in their Observatory area (Baylor's "step-down") for the next week or so while all of her various therapists assess her current status. The therapists will then get together with Kurt next week in one big meeting to discussa rehabilitation plan for her.

She's settled in so well though that we anticipate allowing visitors as early as this weekend. As a general rule, her visiting hours at Baylor are from 6 AM to 9 PM. However, she is scheduled for therapy and rehab between the hours of 9AM and 4PM. (She'll be in therapy for about 4 hours during that time, we just don't know what hours yet.) Once we get the schedule worked out, we'll link to it on this site and people will be able to sign-up or request open visit times. We hope to have a schedule put together by the end of the day and will post it on here as soon as we do; we know everyone is anxious to see her.

December 7, 2005 - Late Afternoon

Just a quick update to let everyone know that the princess has landed! She is back in the big D and being settled into her new home away from home, Baylor. The flight was uneventful and she was "awake" and more relaxed on a flight than Kurt has ever seen her. Happy, happy, joy, joy.

December 7, 2005 - Mid-Morning

Mr. and Mrs. Bethke on the move! As with all travel plans, we're having some hiccups but nothing so far that will prevent Kurt from sleeping in his very own bed tonight again for the first time in over 6 week. We were originally scheduled to leave between 9 and 10 AM EST. The ambulance is ready to go, but the airplane has run into some delays and they've pushed us back to 11 AM. This should get us back to Dallas around 2 and hopefully see the Princess settled into the step-down unit at Baylor well before early evening. We were happy to put regular clothes on her for the travel (sweatpants and a Brinker T-shirt of Kurt's) and we have to believe that it feels good to her too.

As good as it feels to head for home, we'd be remiss not to thank the people of Savannah. Bear with us if this is repetitive. First is the unbelievable medical team (her neurosurgeon, Dr. Suh, all of her docs and especially those amazing critical care nurses are all the shizzle in our book) that never gave up on her. They responded to every twitch of her nose with new and cutting edge technology. You all told us that the body heals itself and medicine just helps it along, but we know that we are able to take her home today because of the long nights and sometimes longer days that you gave to her. Gerry, Diane and little Alex - your generosity makes us speechless. Savannah would have been a bitter and dark place if not for you. To all the other families we met during our time at the hospital (most especially Reggie's family), some with family members remaining and some with family members that have moved on. You are warriors. You fought with us and beside us. Be strong for your loved ones and know that we are still thinking about you. Never give up hope; semper fi. And lastly, to all of the nameless strangers that surrounded Brenda with small and large acts of kindness during the first incoherent 18 hours after the accident. The hospital is a terrible place to be alone and feeling helpless. She wasn't able to properly thank you then, but hopes each of you know that you taught her a lesson in compassion and love. You haven't see the last of us Savannah, we hope to bring our girl back when she's walking and talking so you can see the results of our miracle.

December 6, 2005 - Mid-Morning

Mandy is a bit tired this morning and not feeling as talkative. But that's probably a good thing, because she's got a big day planned for tomorrow! As of right now, she is tentatively scheduled to be flown back to Dallas tomorrow morning. We're still verifying that Kurt will be allowed to be on the plane (we've been told by one of her caseworkers that he will be, but we're trying to verify that information now that we have specific scheduling). Kevin will be driving back will all of the luggage (even in the hospital, the princess manages to have more luggage than Kurt).
The bed is ready for her in Baylor and we're just waiting for the last bit of paperwork to be completed. Baylor plans on putting her in the step down unit for the first few days she's there just to allow her some recovery time from the trip, before sending her to rehab. [A trip on an airplane can jet lag the healthiest among us, imagine if you had been in a hospital for nearly 6 weeks!] We're working on a sheduling system and will publish it here within the next few days. Get lots of rest princess, your winged chariot awaits you tomorrow.

December 5, 2005 - Mid-Morning

Mandy is pretty much unchanged from yesterday's post. She's still busy talking, but we're not making out too much of what she's saying yet. Our big goals for today are finding out whether she'll be getting on the plane to go back to the Big D tomorrow or Wednesday and determining how to handle all the anticipated visits from family and friends. At this point, we'd like to plan on giving her at least 2 days of recouperation from the travel before she receives visitors (if she's up to it before then, we will of course post that information). This would mean that Friday or Saturday would probably be the first day for visitors. We'll get back to everyone later with more information on schedules etc. We know everyone is very anxious to see her and of course, it will be good for her to see familiar faces. We may try and put together a sign-up schedule so that visitors are spaced at a rate that they don't overwhelm her - so for those of you who don't like planning anything out ahead of time, this may be a "growth opportunity" for you! We'll post more when we have more specific information on departure date etc.

December 4, 2005 - Mid-Morning

Mandy continues to become more active and talkative with each passing day. We still can't understand most of what she is saying (it's very faint and she gets quite tired), but we expect more time, rehab and eventually getting that trach out will help. She responded to Kurt's "good morning" with a "good morning" of her own this morning. He also thinks that she asked him to "shut the door" to her room after some passersby were being a bit loud. She even had quite the conversation with her neurosurgeon today after he stuck his tongue out at her (trying to show her what to do). Not sure what she said, but sticking out his tongue certainly got her attention.

She's also making efforts to keep comfy. The nurses rotate the patient's body positions every few hours to prevent bed sores. Where Mandy used to just tolerate the positions they put her in, she is now repositioning herself after the move to something more comfortable to her. Perhaps she REALLY is the princess from the fairy tale with the pea under her mattress after all! We'll have to get Kurt to find that darn pea.

We're still on track to bring her home Tuesday or Wednesday. Since it's the weekend, not too much has moved either forwards or backwards. We hope to find out more specifics tomorrow.

December 3, 2005 - Mid-Morning

Big news today - the princess was finally moved out of critical care and has been given the all clear for travel! She has been moved to room 530 and has the room all to herself. She was doing some talking this morning. She told the nurse that she had a headache (of course, they gave her some meds to help her feel better) and she told Kurt and Kevin that "she fell outside" and "it hurts behind her eye". [The left eye has been much slower to heal]. Her voice is still barely a whisper so the room must be quiet and you have to strain to hear her. She also showed some signs of her feisty self, by trying to pull the trach out yesterday. Kurt had to try and reason her out of that one. [The trach will be left in at least until she gets through the air ambulance ride.] During the visit, Kurt also noticed that she winces when he does PT on her left leg (although she tells him it's o.k.) and less mobility in that foot. They're going to have the doctors looks at it just in case she might have done some soft tissue damage to that foot.

We've decided on sending her to Baylor in Dallas. They believe she is borderline in terms of being ready for rehab vs acute care, but would like to start her in the rehab program. She's been moving fairly quickly for a head injury (after the initial 2 weeks) and they'd like to keep her on that track. If she can't handle it, Baylor has an acute care facility that they can move her to. We expect the paperwork to be completed and a bed to be ready early next week. We hope to be putting Mr. and Mrs. Bethke on a plane bound for Dallas on either Tuesday or Wednesday. [We weren't sure they'd do it, but her insurance carrier even agreed to pay for that plane - yeah Blue Cross Blue Shield of Texas!!] Get ready Dallas, the princess is coming home soon!

December 2, 2005 - Mid-Morning

Princess had a nice restful night and woke up ready to interact today. Kurt asked the nurses to wash her hair this morning. When they sat her up to blow dry her hair, he asked her if she was o.k. and she responded by nodding her head up and down, yes. When her nurse Lori started french braiding her hair (the best hair style for being in bed awhile), the princess said "Someone's pulling my hair...". It made everyone smile. Kurt reassured her that they were just fixing it for her and she seemed perfectly fine with that. Before they left the morning visit they rolled her bed nearer the window so that she could look outside during her "awake" moments. She tends to sleep somewhere around 20 hours of the day right, so we're happy when her "awake" times are coinciding with the visiting hours.

The neurologist from the local rehab facility is expected to visit and assess her at some point today or tomorrow to determine whether she is ready to for rehab or will need some intermediary acute care while she builds up the strength for rehab once she gets to Dallas. We're still on track for having her released for travel within the next few days and trying to get her back to Dallas next week providing she's strong enough and a bed is a ready. We're keeping our fingers crossed for lots of continued good news.

December 1, 2005 - Mid-Morning

Lots to share on this one, so sit back. Mandy had another CAT scan this morning to evaluate her "readiness for transport". Her neurosurgeon hasn't looked at it yet, but we anticipate him releasing her for transport as early as tomorrow. The first thing that means is that they will release her from the step-down unit and into her own room. The second thing that means is that we will be able to bring her back home to Dallas as soon as 1) we've selected a hospital and 2) they have a bed ready for her. Kurt thinks he might have narrowed it down to 2 good choices and is in the process of doing the paperwork, getting the neurosurgeons/neurologists in touch with each other and generally crossing i's, dotting t's. Should all things go well, we believe that she may be coming back next week. We did find out that Kurt should be able to accompany her in the plane, which shoudl be great for both of them. We'll keep everyone posted on the travel schedule etc as it develops.

Her trach has now been capped for over 12 hours and she's been breathing through her mouth and nose with very little oxygen assistance (yahoo - no more raw nose!). She tried doing some talking last night in the evening visit, but Kurt wasn't able to make out what she was trying to say so we haven't heard anything beyond her initial first words late yesterday afternoon. (Her voice is barely a whisper at this point). Her trauma doc did get her to respond to some basic commands this morning (wiggle your left foot, squeeze my hands) but not others (give me the thumbs up sign). She seems to be responding only to the things which interest her at any given moment (no one who knows the princess well can be at all suprised by that). She didn't feel like talking at all this morning, but she was "awake" and watching Kurt walk aroudn the room a bit when she wasn't watching t.v. (we've been keeping the channel tuned to the Food network and the Animal channel as they seem to be her favorites). We're trying to avoid overstimulating her as we've been warned by the PT that overstimulation can cause her to shut down entirely and tune us out. So we're trying to keep our requests for interaction minimized to the periods when she seems to feel up to it. As we've been told many, many times, brain injuries often move at 2 steps forward, 1 step back. As long as her net progression is forward, we'll take it at whatever pace she can manage.