January 30, 2006 - Late Evening

What a difference a month makes! Now that the princess is settled into her digs and able to receive phone calls (see blog entry below for the phone number and instructions), Brenda rang her up and had nice chat with her this evening. After saying hello, Brenda asked if Kurt was with her and Mandy responded with a resounding yes and a note that he was "hot" and then that he was "sexy". They spoke on the phone for about 5 minutes and Mandy was able to track with the entire conversation. She was able to answer questions about recent history (what did you have for dinner? did you get sick today? did you have therapy?), current items of interest (I sent you a letter) and respond appropriately to questions about future plans (what are you going to do tonight?) [The anwer for those were: something cold (yogurt per Kurt), yes, but feeling better, some therapy, oh good! and watch TV and eat grapes. Specifically, she was going to be watching Channel 8 tonight for anyone in the Dallas area and knows what happens to be on Channel 8 and is looking for something interesting to watch.] The concepts still need to be kept fairly simple and straightforward for her to track, some of her words are still jumbled and she isn't initiating much of the conversation, but the entire conversation was a big advance from only a month ago. (When told that Brenda's dog sent her doggie kisses, Mandy responded in true Mandy form,"Send pictures!")

She is a little under the weather again and having trouble keeping food down. We're not sure if it's pancreatitis or a flu bug, but either way, they're keeping a close eye on it. Otherwise, the princess is all settled into her new royal apartment at CNS and is ready to receive visitors. Don't be put off by the "picture" thing described below, visiting is really easy. [We discovered that you can guarantee seeing her in the day visits by coming around lunch time from 12 to 1 when she eats in the cafeteria with everyone else.] It's quite amazing to see how much progress she makes even between the shortest visits. If you run into any problems scheduling a visit or finding the location, feel free to give Kurt a shout (and he'll either direct it to the appropriate minion or help you himself).

January 27, 2006 - Late Afternoon

The following is an excerpt from Christine and her day helping with the move,"Amanda was very talkative this morning before we packed up to go. She wasn’t always making sense, but seemed to be in a very good mood. She was given a new wheelchair (one that fits her size great!) & walker right before we left. As soon as her hiney hit the seat in that chair, she took off towards the door to start the “good-bye tour”! Since this chair is smaller, she can maneuver in it very well. We walked up & down the halls, peeking in all the rooms & giving out hugs to all who know her.

Amanda got to ride with Kurt to her new temporary home in Irving. We were greeted with lots of papers to read & sign. Mandy & I went off for a bit of therapy while Kurt finished up. For starters, they just wanted to see how she could get in/out of her chair & small tasks to get to know her.

We all had lunch in the cafeteria. Someone had picked up some food for all 3 of us. She has a monitor (not sure of this persons’ title) that will watch her eat just to make sure she is taking in plenty of calories to keep her energetic since she will be working very hard at CNS!

After lunch, she had a few more therapy sessions, much like at Baylor. Today was mostly for the CNS staff to get an idea of what she is like & get her oriented with the new surroundings. Overall, her days will be much like they were at Baylor, very structured & organized. Her schedule, changing daily, will be posted at CNS on the cafeteria window, not on her wheelchair. So if you visit, which is encouraged, check there to find her.

CNS has weekly movie nights & dinner out & grocery shopping. Amanda has a roommate, plus they each have a Resident Assistant that follows them into any room, taking notes regularly. So for a lot of her “home” time, she will very likely have 3 other people around her. The apartment is about 4 miles from CNS. Unless she has a date with Kurt or other plans, she will likely be there by about 4:30 on weeknights. To visit her there, you must check in at the office, where you will get your picture taken! Fair warning! Upon leaving, you must check out too. The address is:

3915 Portland
Irving, TX 75038
972-594-0549 (office)

We cannot call her room directly, but call the office to be directed. Weekends are free of “scheduled therapy”, although everything Mandy does is considered therapeutic. The blog calendar is still a great idea since her place is very small. Mandy was pretty exhausted after such a busy day!! Overall, I think it went very well."

And from Kurt, he notes that visit times are over at 9PM on weekdays, 11PM on weekends. CNS encourages visitation/socialization during her meals (lunches as well). Folks are encouraged to visit during the day as well as evenings. Just beware that certain therapies during the day are "solo" therapies and we are not allowed to accompany her on those. Everyone is encouraged to visit as much as their calendars will allow. We know that she enjoys the visits (as always, she is still quite the social butterfly). We are hoping that she will be able to get home for another visit this Sunday so that Kurt & Mandy can have some more much needed alone time. Although we all want Mandy to get as much therapy as she can handle (and insurance will pay for), we are all very much looking forward to the day when she gets to sleep in her own bed beside her husband once again.

January 23, 2006 - Mid-Day

Mandy had a great weekend. Friends Donna and Chris flew in from Baltimore to visit with her and it was obvious to all that she enjoyed the visit very much. Kurt was even able to take advantage of the visit. He took his first day off in 3 months to do some brewing with Chris Owen. As he kisssed her good-bye on Satuday morning and told her what he was off to do, she grabbed Chris P.'s hand and said,"I'm going to stay here and play with MY Chris." She was quite talkative for the rest of the day and most of the weekend. Interspersed with her work conversation, she also shared stories about the other patients on the floor. (True to her normal social self, she now spends some time each day checking in on all the other patients on her floor)

She was able to make a visit home yesterday from around noon till dinner time. She had lunch with Kurt and was able to see and love on all of her kitties. When Henri (the cat that loves to smell people's breath) came over to see her and give her the once over, she immediately opened her mouth a little bit so he could smell. She spent a nice relaxing day watching some TV and napping before it was time to go back.

She is still scheduled to be released from Baylor and admitted to CNS on Thursday morning. We will get a better idea of Amanda's schedule then and we anticipate posting the visit information on Friday morning.

January 21, 2006 - Late Afternoon

Following is an excerpt from Martha's day with Mandy yesterday,"It was a fun Friday with Amanda. Evelyn, my sister, and I went to visit Amanda Friday morning and she was alert and very chatty. We started the day out with group therapy and since it was a small class my sister and I decided to join Amanda in her group. When Michael, another patient, was wheel into the room Amanda said “Ooh he’s hot! Do you want him?” This gentleman had a neck brace on, with a broken arm, probably not looking his best. I said “No, I am married with children, but you’re right, he’s hot!” Amanda is such the charmer.

After group therapy we went to the pool to work out. In the pool area they had the Eagles on the radio and Amanda sang every word to “Hotel California” for the therapist while she was helping her work out. The therapist tried to get Amanda to walk in the pool while holding on hand rails, however, her left foot hurts right now and she just hopped on her right foot for the entire time.

Mandy changed to dry clothes and we decided to play some cards. Amanda has some really cool “I Spy” cards. Then it was back to more physical therapy with Brian. Since Amanda was in a singing mood we decided to bring her radio with us. We listened to the Eagles some more while Brian was stretching out her legs. After several stretches she tells Brian “You can kiss me know”. Brian chuckled. “I will kiss you” I said and I kissed her forehead.

At lunch time Mandy was very hungry, she ate everything, except she kept spitting out her peas, every single one of them. After lunch Evy and I sat with her and we all looked at Better Homes and Garden Feb. magazine and talked about all the chocolate recipes.

During her last physical therapy session, Mandy had to work out her arms. Christopher, her therapist gave her some small barbells for her to lift. After doing 10 arm lifts Christopher asked her to do some more and she responded “You could be a sex god." Mandy had a fabulous flirty Friday! Love, Martha"

January 20, 2006 - Early Morning

From Dacia's breakfast with Amanda yesterday,"Mandy was the cutest thing this morning! Terri and I were with her and having a hard time getting her left foot in her shoe. We decided to have her stand up and push her foot down into the shoe. We supported her on each side while she did it, and after she got her foot in her shoe we told her she could sit back down if she wanted to. She stood there and said very sweetly, "you can kiss me now." So we both smooched her on the cheek and she got a big smile on her face, said, "thank you," and sat down."

January 19, 2006 - Early Morning

The following is an excerpt from Terri and her day with Mandy yesterday: "Today was a GREAT day!! Almost every therapist who worked with Mandy said so. She even stayed awake and participated in group therapy. She also did part of a word search puzzle, stacked blocks to match pictures, and put shapes in the matching holes (at least, until she got bored with each endeavor).

When I got there, Dacia was there, and I have to agree with Christine – Dacia is great at getting Mandy to eat her breakfast. She only spit out two bites. I was very impressed.

She still doesn't want to walk on that left foot, but the specialist she saw this afternoon said the problem with that is just a stiff tendon, and it will have to be stretched and worked out - something Mandy won't be too happy about, but it means she doesn't need surgery!

She stayed awake all day, and she didn't even play with her monkey until late afternoon, then she said, “I love him.”

She couldn’t remember my name – first she told a therapist I was Rene. When the therapist asked “Rene or Terri?” she again said “Rene”. Then, later, someone else asked who I was, and she said “Yvette.” Still later, we were alone on a walk, waiting for the elevator, and I asked her if she knew who I was. She said “no”. I said, “I’m Terri. Do you remember Terri?” She said no. Then I said, “That’s me. I’m Terri and we are very good friends.” Mandy tilted her head and in her sweetest voice, said “Oh,” like it made perfect sense.

I also noticed that she called her bed a cubicle more than once, and I thought that was interesting. She really does know what she’s talking about, she just can’t always convey that to us. I’m very much looking forward to tomorrow, which I’m sure will be another great day! Love and hugs to all,Terri"

January 18, 2006 - Early Morning

It may be a cloudy day over much of the country, but we have lots of great news that is a little bit of proverbial sunshine. At 5 PM last night, they removed the IV from Mandy's arm and for the first time in 3 months, she is free of tubes, holes, bags, needles or any other medical apparatus. Free at last, free at last! For the first time since she's been capable of independent movement, she even went to sleep unrestrained last night. This should all clear the way for a short pass this weekend. We're hoping that Kurt will be able to take her home for a few hours of quiet time amongst her own things. Keep your fingers crossed!

They did push her release date back to January 26th. We were actually hoping for this, so this is a good thing. She lost a week of good therapy time while she was sick and we really wanted her to be able to make it up. Although we're anxious to get her home, we've seen the results and benefits from the therapy and we want her to get as much of it as she's able to handle and insurance will pay for. So we're happy about the extra week.

Her neurosurgeon stopped by yesterday and examined her while Dacia was having breakfast with her. He says that she's doing great and he doesn't think he needs to see her again unless she runs into any problems. What great news! Her only other "physical" problem remaining at this point is the ankle that keeps hurting her. She's scheduled to see a specialist this afternoon as the rest of her team is at a loss as to what's going on. So other than that ankle, it looks like we should be able to primarily focus on strengthening her physically and focus hard on rehabing her cognition and speech.

And in line with all this good news, she had a great day yesterday. She was alert and "on her game". She attempted to help with the removal of the IV last night (peeling off the tape, swabbing the area with the alcohol). She enjoyed looking at some catalogs with TAnn last night (like any woman, she always seems to enjoy that!) and commented "That's beautiful!" or "That's blue -" (which was correct). TAnn feels that she's making more connections then she has been making. When she was looking at some groceries she commented,"Wow, that's a lot" and then she said,"I cook -" to which TAnn responded,"Yes, you're the best". Her cognitive skills definitely seem to continue to improve (especially now that she seems to be over the worst of that pancreatitis) and we're looking forward to everything the next week holds for us.

January 17, 2006 - Mid-Morning

Mandy continues to be a little tired from all the medications and is having her therapies bed side to the extent that she is able. We did get some very good news yesterday. They did the "scope" as planned in the afternoon (with Kurt at her side) and affirmed that she does not have gall stones. (Which is very good news indeed). It appears that her pancreatitis is actually a chronic condition that she's had for about a year and has been caused by various medications she's been taking. (Which also explains all the digestive problems she was having even before the accident). The recent increased in medications and the stress just exacerbated it. So the good news is that her problem does not require yet another surgical procedure, the better news is that this is a pre-existing condition and not another complication arising from her accident and the best news is that they think they should be able to control it by trying different medications. We can't help but believe that the great news was yet again the result of all of the mountain of prayers and good energy sent to everyone over the weekend. You all are doing more than you think!

Although she is technically still due to be released to CNS on Thursday, we believe that they'll keep her for another week so as to try and recoup this "sick" week. So please don't stop visiting! We have a need for day time Monday through Friday visitors right now. [Weekends and evenings are generally pretty well covered.] With her IV's, she is restrained when no one is with her (she'll pull them out otherwise). To the extent you have ability in your schedule, please do schedule yourself to come see her then. She really benefits from seeing the familiar faces!

And on a lighter note, we have some cute Amanda stories to share. She must have been appreciating her vision yesterday. When Kevin showed up, she told him he looked "pretty". [For those of you that haven't met Kevin, we need to give you some visual cues so you can appreciate the humor of that comment. Kurt calls him Jesus on a motorcycle. That description may not be too far off the mark. Kevin was wearing his bike leathers. He has a beard and longish hair; he's not a smoker but he is the picture of a the Marlboro man on his bike. Handsome sure, pretty? Well, we have to imagine how much he appreciated that.] They also had "dog therapy" last night and Mandy told the various dogs that they were "such good boys" and "weren't they pretty?" Since one of them was a Great Dane, we know she had to have felt right at home!

Finally, TAnn shared a nice story from last Friday. Martha has made a scrapbook for Mandy out of all the blog entries and comments left by friends and family since then. (Thank you Martha!) Mandy read through the entire book last Friday. Not once, not twice, but 4 times. She read every word; every comment. She followed along with the words with her finger on the lines. We believe that she was absorbing it all. We hope and wait for the day that the last post is made to this blog and it is Mandy typing that last entry into the keyboard. Visualize whirled peas.

January 16, 2006 - Morning

Mandy had an o.k. weekend. They started her back on solid foods mid-day on Friday and she seems to be doing o.k. with them. They are upsetting her stomach on occasion, but she is keeping most of the food down. At this point, they believe her pancreatitis was either caused by gallstones or her medications. They have already begun changing the medications that might be causing the irritations and they are considering doing a "scope" to determine if there are any gallstones. (A "scope" involves sending a camera down the back of her throat to take a peak into her system). If it's gallstones, they'll need to remove them (otherwise, she'll continue to have this problem going forward). We're hoping it's the medications as that will just involve them finding the right "mix" and types that she can tolerate. They are also giving her some medication to slow down her digestive system (so as to reduce the irritation to her pancreas) and we believe that it was slowing her down generally for the weekend as she slept a lot. Since the body does most of it's healing while we sleep, this isn't necessarily a bad thing!

She was able to talk to both Ron and Brenda on the phone yesterday. Her ability to find the words she wants to convey meaning and to understand what is being said to her is slowly improving. She is able to "participate" in phone conversations (when she is feeling up to it) for the first few exchanges if they are kept to simple concepts. She does quickly get tired and her words tend to become jumbled after the first few sentences. The speech problem is common in individuals with traumatic brain injury (TBI) and is referred to as aphasia. Like all of us, her ability to form coherent sentences and communicate is at its worst when she is tired or not feeling well. We expect her ability to communicate to continue to improving with time and therapy.

Her release date is still scheduled for this Thursday but we believe that they'll probably push it back in light of her pancreatitis. (To the extent she is able, all her therapies are being conducted bedside right now). There is a "release" meeting scheduled for mid-week so we'll know more then and update everyone as more information becomes available.

January 13, 2006 - Early Morning

Amanda continued to rest up and try to let her pancreas heal yesterday. She is pretty much confined to the immediate area around her bed (so as not to aggravate her pancreas and allow it to heal) so she is not having any therapy outside of her room. She was quiet for most of the day but became very animated for a phone call with Brenda. When Brenda told her that she missed her, Amanda gave her a very enthusiastic,"I miss you too!" She was particularly interested in going shopping again (Kurt says that she asked him the other night to go shopping!). When Brenda asked her whether they had taken her to Starbucks since she'd (Brenda) been gone, Mandy gave a very emphatic and annoyed,"No!". Kurt has promised to get right on that as soon as Mandy is healthy enough to go again. She was sitting up and seemed to be feeling good even into the evening when Kurt arrived (although she was running a slight 100.8 degree temperature).

Her neurosurgeon is going to come see her this afternoon (after looking at her CT) and we should get a download as to his/her opinion on her progress. Her GI doctor is monitoring her pancreatitis and will make sure that she is getting all the treatment that she needs (right now that's just rest, no food and lots of liquids). Mandy tends to like to buck the trend and give us good surprises on auspicious days; so let's hope that she continues that good trend on this Friday the 13th.

January 12, 2006 - Early Morning

Our girl has another challenge that could use some prayers and good karma sent her way this morning from everyone that has any extra to spare. The good news is that they DID take her feeding tube out yesterday so we know that she has to be a lot more comfortable. The bad news is that they took it out because they were concerned her nausea was more significant than just the flu. She was taken for a CT scan and sonogram on her tummy yesterday and they discovered that she has acute pancreatitis. (We found information on the NIH website here regarding: http://digestive.niddk.nih.gov/ddiseases/pubs/pancreatitis/) They have started her on an IV and are restricting her to liquids only by mouth to keep her hydrated. They really aren't sure what pancreatitis is caused by (although we have to guess that the stress her body has been under and the drugs that she's had to endure to help get her to this point hasn't helped) and it sometimes just goes away on its own. That's what we're all hoping for, but we're going to talk to the doctor today about what the treatment options are right now. The good news is that she doesn't seem to be too uncomfortable and although a bit tired, she is still talking to us and doing her normal stuff.

Despite feeling under the weather, she had a good day with Yvonne yesterday. The following is an excerpt from Yvonne's day with our girl. "She was able to get in some of her OT today. And even though she couldn’t go down to do her PT I brought up some therapy tools to work with her. She did 2 puzzles and really seemed engrossed in them. I would put the perimeter of the puzzle on and she would have to find the interior pieces. Even though she may not have got them right the first time, she continued until she did find the correct piece and maneuvered it in to place. We did these for quite some time then took a break and began reading a picture dictionary. This she really enjoyed as she flipped through the book until she got to the pictures and glanced at them for a bit, even pointing and making comments such as, ‘pretty’, ‘nice’. She continued to turn the pages, breezing through the ones with no pictures, and when she was finished, she started all over again. We also looked at cute animals dressed up in their Halloween Costumes. She particularly liked one of a lizard riding a horse! We then went through some pictures I have saved on my computer from Christine’s (Yvette’s girl) Quincinera (sp?). I have to brag a bit because when I pointed out my daughter Brooke who was in Christine’s ceremony, Mandy said ‘she’s pretty’. I then gave Mandy a manicure with a hot red color. She seemed to be enjoying the pampering!"

January 11, 2006 - Mid-Morning

Mandy shows off her new haircut!
Monday night was TAnn's night with Mandy. She was talking to Mandy about her upcoming birthday (January 21st) and telling her (Mandy) that she never forgets it. When TAnn told Mandy that she's going to be 65 years old this year, Mandy looked straight at her and said "that's real old", making TAnn laugh. At one point as she was taking Mandy for a roll/walk around, TAnn asked her if she'd liked to call Ron and Mandy responded,"Maybe later". She spent a lot of time reading on Monday night; particularly the scroll at the bottom of the screen on CNN.

Yesterday was Joyce's day with Amanda and it was the first full day without the back brace! (Yahoo, another piece of equipment gone! Now if we can just get that stomach tube out...) She was pretty sleepy in the morning (they tried cutting back on her ridalin to see if she still needed it. They very quickly realized that she still needs it and the bumped her back up to normal dose at lunch time.) She was doing OT in the morning session. They are trying to give her more "real-life" therapy per our requests. They were doing laundry, but they didn't realize that she doesn't do it at home, so her lack of interest was perfectly normal. She had water therapy in the afternoon and that really helped her to wake up. She did her normal 2 laps in the pool. In addition, Mom and Grandmom came to visit and brought her the Scotland scrapbook. She spend a lot of time going through it in great detail yesterday.

Physically, she's still suffering the tail end of that flu bug and she was running the slightest fever last night. She's feeding herself, but still needs assistance getting through the meals (taking small enough bites and focusing her attention on finishing the meal). The staff has assured us that there is no change to the discharge date of January 19th and she is on track to make the transfer to CNS then. In fact, the doctor told Kurt that they are going to have a hard time saying good-bye to her because they've all grown so fond of her. She told him that they've never seen anyone with such a big and good support group. It makes us smile because we know that it's a testament to our girl.

January 10, 2006 - Late Afternoon

Blogger is giving us fits with pictures again today, so we'll just have to settle for a narrative. The following is an excerpt from Shannon and her observations from the marathon walk on Sunday!

"Well, Mike and I went to visit Amanda on Sunday. We had slotted the 2-3 but no one else was scheduled until 5:00 so we hung out until then. When we arrived Mandy was doing her marathon walk. She was actually at the elevators waiting to go down. We got to see the tunnel underneath the street between the buildings. She walked almost all of the tunnel that goes down and then back up on a pretty good slope. Kevin was walking in front of her and she would often smile at him. (so nice to see that smile). She was talking a lot even though her words don’t always go together to make a good sentence she is clear in her speech and doesn't make up too many words. Although, Mike and I both think she might be melding medical terms to come up with new words all together. After the adventure in the tunnel we stopped so Kurt could have a drink and he shared it with Mandy. We headed back to her building and went outside and sat on the benches out of the building. I know some of you think this might be crazy but living in Dallas we had a beautiful day between 70-80 degrees and it was so nice. Amanda talked a lot while we were out here and even spoke on the phone to someone named Pat. On our end it seemed she was answering questions and keeping a very good conversation.

Kurt and Kevin left to get a bite and we are pretty sure Mandy thought she was going to go to quote "Okay, I'll ride with you" to Kurt… After she left she asked Mike if he had a tire and he said do you need a tire and she said "yeah, we can throw it at Kurt" (or something there of). When she was picking at her eye (still a few stitches) I stopped her and told her she couldn't do that or Kurt would get mad at us and not let us come back to visit she said "he can be so sh*tty". For those of you that know Mandy that was so perfect of her to say. At another point when she was telling one her stories very intently she looked at Joyce and said "Do you disapprove?" with a totally sassy Amanda voice! We eventually went back up to the room for her dinner and we were flipping through magazines together and she pointed out a cooking piece she liked. She had fish for dinner which she tried to feed to me and to Joyce. She was feeding herself, and appears to really like the cabbage in her salad. When we left she told us to "have fun" and said good bye and gave us a wave.

Last night she called me again. T'Ann is so great to help her in that! She spoke very quickly and had a lot to say to me, but eventually she started talking like she was leaving a voicemail on a machine and left me her phone number (which by the way was darn close) and told me to call her back sometime so we can discuss it! Then said good bye and hung up! The best treat is seeing her name on that caller ID!

Thought I would let you know how the last visit went and my latest phone call. She is doing awesome and with the trach out her speech is so clear. Now, to get the feeding tube out. Next thing for everyone to pray for!

Oh, and she gave Joyce a big hug. Joyce was helping her stand up and she just stopped and hugged her. It was so sweet.
Oh, and she kissed Kurt on the elevator, it was the sweetest thing!!"

January 9, 2006 - Mid-Morning

Sunday was a much better day for Amanda's tummy. She was able to eat all of her breakfast and most of her lunch. She was a still a little sick, but much better on the whole. She even felt well enough to make the marathon of all her walks to date. At Kurt's suggestion, she agreed to walk to the dining hall (a fairly short walk out of the room, around the corner and across the hall). However, she paused at the elevator on the way, ignoring the up elevator, and got on the down elevator. She then navigated her way to the basement and began going through the tunnel. At some point, Kurt realized that Mandy had decided that the "dining room" she wanted to go to was the cafeteria across the street at the hospital that Kurt and Brenda had taken her to a handful of times in the prior week! (We wonder if she had Starbucks on her mind?) She made it down an extremely steep ramp and half way up the other before she tired and needed to sit in the wheelchair. This was her longest walk yet. She's using the walker with a lot of proficiency now and only needs a minimum of assistance balancing. She's quite the woman.

The stress fracture on her vertebrae is no longer visible on the x-rays. We hope that means that she no longer has to use the back brace that she seems to find so annoying. We've got a question into the staff about it. Kurt has also selected her "group" house. The plan is for her to go to CNS (Central Nervous System) in Irving. [They have a very extensive website. If you google CNS Dallas, it will come right up.] After visiting a few places, TAnn, Joyce and Kurt were all 100% in agreement that CNS was the right place for Amanda in terms of a program specifically tailored to her that encouraged family involvement and her physical safety. [And of course, by now, everyone should know that when we're talking about Kurt and Amanda, family means the family we choose as well as the family we're fortunate enough to be born into - everyone that has spent time caring for her or sending her their love and prayers can consider themselves family!] The official date of move is still next week; however, the "transition" session has not yet been scheduled so we're not sure if we're still on track or if it's going to be delayed another week or so. We'll keep everyone posted as to the planned date and whatever the new "visit" program will be when we get closer to that date.

January 7, 2006 - Early Afternoon

We thought we'd share a picture of Mandy's visit with Simone the day after Xmas. (The trach and collar are of course gone now). Yesterday was TAnn and Amanda day and TAnn shared that Mandy looked absolutely adorable in a blue monkey outfit that one of her recent visitors thoughtfully brought for her. Everyone fussed over her cute outfit all day. She had another session of water therapy and made 2 trips around the pool. They fitted her ankle with another brace to help combat the pain she's been experiencing with it. It's an air cast that they hope is going to provide her with some more suppport. TAnn brought in her laptop and Mandy spent some time typing away - she seems to enjoy listening to what you say and then typing the words into the computer exactly as you say them. She ate very well all day yesterday, eating 100% of her lunch (very important as she is on a calorie count now to determine whether the feeding tube can be removed). The eye patch arrived, but she tends to put it on and take it off. She doesn't really wear for very long periods, but she has stopped fussing with her eye so much.

She's not feeling as well today though - she seems to have caught one of the stomach viruses that are going around. So it's probably just as well that we hadn't heard back yet about that pass. Since she's feeling a little under the weather this weekend, we expect this to be a quiet weekend and will update again on Monday.

January 5, 2006 - Mid-Morning

It was another good day in rehab. Ladonna cut her hair - just above her shoulder with a little flip out at the bottom. It should be a lot easier for her to take care of and of course, what women doesn't feel better after a little TLC? We don't have a good picture of it yet (she was a little tired last night), but we'll try again today.

The weekly report from her therapists was the best one yet. She is definitely showing improvements, especially in her physical therapy. They noted that her writing/reading comprehension and communication is improving more rapidly than her speech so they are going to spend some more time on her speech. Being quite the talker that we all know her to be, the inability to say everything she wants to has to be terribly frustrating for her. We know she's going to get there before long though; she's working really, really hard at all of her therapies.

There was no mention in the report of the potential pass this weekend, so Kurt is going to follow up with the Baylor and find out when he can give her a change of scenery. They also held her feeding tube last night (they didn't give her any food through the tube as she's getting enough calories through her meals). We're trying to encourage the staff to remove the tube as soon as it safe and practical. We know that it annoys her to no end. She continues to get better each day!

January 4, 2006 - Mid-Morning

It was another busy day in Amanda land yesterday. She had a busy day of group neuropsychology, one-on-one neuropsychology, OT, and 2 sessions of PT (she has one in the morning and one in the afternoon). They also did a calorie count assessment. In order to remove the feeding tube, she must be eating sufficient calories orally and be able to swallow pills. The calorie count is one of the checks they do to determine if she's ready for the tube to be removed. We don't have feedback on that yet. (Although Kurt was able to eat all of her meals with her yesterday and he said that she did a great job. And if you've seen the hospital food, you know that's pretty impressive.)

For her afternoon PT, she worked with Joann (Joann does the best job motivating her) and she actually walked around the room without the walker. Joann helped support/balance her from behind, but she did the hard work herself from what we coudl tell. She also rode the bicycle for the first time. We were very impressed to see her put in a whole six minutes! In OT, they gave her some more challenging activities and that seemed to encourage her a bit more. She bounced the ball with Kevin and lifted some barbells from her shoulder to her head about 3 times. We didn't attend her speech therapy session with her, but Mandy did read the name plaque outside the door: "Cabal" (That's her speech therapist's name. When Mandy heard it last week, she looked at the therapist, nodded and said, "wierd".) Today, her therapist responded to her reading the name off the plaque,"Yes, my name is Cabal." Mandy looked back at her and said,"Yes, I can see that on your monitor." They have the weekly update meeting with all of the therapists today, so we hope to be able to report tomorrow that she'll be able to get a pass this weekend. Fingers and toes are crossed!

Her hair cut has been rescheduled for today; so we're excited to see what new 'do Ladonna is going to create for our girl. She also had visitors from each of the potential group homes that she'll go to next come today to assess her current skill level (they do an early assesment to help determine which program level she would go into). The release date is still scheduled for the 3rd week in January.

And of course, the Mandy spirit is still fighing strong. When Kurt saw her in the evening, he asked her how her day was. Her answer was short and sweet,"It sucked." That's the girl we all know and love.

January 2, 2005 - Late Night

Mandy continued doing well both yesterday and today. She walked 2 laps around her floor on her walker yesterday (with help from Kurt and a few standing breaks) in 2 separate walks. Her left foot seems to be improving (we saw her move her toes on it yesterday) but it still causes her some pain. Her cognition remains hazy; her communication skills improve everyday but the words are still pretty jumbled. She is feeding herself for the majority of mealtimes, but she is still prone to distraction and needs assistance making sure that she eats all of her meals. She is swallowing her pills regularly now (instead of having them mashed up in her food) which is one of the important steps towards getting her stomach tube removed. When she is "on", she is able to concentrate on tasks that she is enjoying for about 20 minutes. If she's bored, well, she's still Mandy. If she has no interest in what's going on, she tends to let you know that.

Now that the swelling is down from the surgery on her left eye, it has opened back up a bit. She is now able to fully close it when she sleeps and this is good news for her cornea! We've ordered her an "eye patch" to see if it will help keep her busy hands away from her eye; if it works, we know she'll be the cutest pirate ever.

She had her best session of group neuro psychology this morning. She was attentive for the first 20 minutes and even showed interest in reading the headlines on the daily newspaper that was being discussed. (Can't blame her for losing interest in the last 10 minutes as the conversation was all about the Dallas cowboys and their most recent game.) She still hasn't recognized the current date, but we think she's getting closer as she wished her visitors last night a Happy New Year (we're not sure that recognizes what that means, but she did spontaneously wish them a Happy New Year none the less). Her doctor mentioned giving Kurt some games and activities that he could play with her to help her improve her cognitive skills.

The most exciting news is that her PT hinted that depending on how her group session goes this weekend, we might be able to get a "pass" for her this weekend for a very brief outing out of rehab with Kurt. Everyone keep your fingers crossed!

January 1, 2006 - Mid-Morning

The first day of 2006! May all of our wishes and hopes be brought to fruition in the new year. (Should we call it the Year of Amanda?) We discuss the date with her first thing every morning. She doesn't generally have a sense of time, but she did say "Wow" when we told her it was officially 2006 and the first day of the new year.

She continues to progress forward. Because yesterday was a Saturday, she only had physical therapy. We went to the 2nd floor and she walked the entire length of the building (twice) with her walker (with breaks of course - she danced and sang with Brenda in her standing breaks. She hooked her fingers into Brenda's jean pockets and belt loops just like we all used to do at high school dances.) We sing to her as we walk as well and that seems to help motivate her. Her attention span also appears to be increasing. She spent at least 30 minutes looking and re-looking at the scrapbook of her first solo trip with Brenda. She pauses to read some of the words out loud (although we're not sure if she's comprehending the words she's saying). Teresa and Lauri visited with her yesterday and brought her a "Bad Cat" book (pictures of cats with captions). She looked through the entire book (spending about 20 minutes). As well, we were able to "play" cards. Taking turns with Brenda, she was successfully able to sort half of the deck into the correct suit - only missing one card! She spent about 20 minutes in the kitchen looking at the items in the drawers, getting tea (making faces about having Lipton hot tea) and having a generally good time. In the afternoon, she had her nails painted and she was able to pay attention and even assist by holding her hands in the air without asking and blowing on her nails to help them dry. Her attention span is much shorter when it comes to conversation and much of her conversation is still contextually misplaced and/or difficult to understand, but we're happy to see it expanding for activities. Although, with increased mobility comes increased responsibility on the part of everyone around her. She's very "impulsive" right now and and has little sense of her own safety. She'll take her hands of her walker and attempt to walk away from it, she'll grab items/jars to open and may try to taste, drink or eat things that might harm her, or the most frequent is that she'll try and stand from her wheelchair without proper support. Oh and, she's really, really fast when she decides to take an "impulsive" action. You have to be really alert to her every movement.

The best funny story from the yesterday has to involve OT. We took her for a roll out and about the building. It was pretty empty so there weren't a lot of people around for her to watch. She was great rolling through the PT room and seemed to enjoy watching the 1-2 people that were there working on their exercises. But as we turned the corner to roll through the COMPLETELY EMPTY OT room, she leaned back in her chair, pursed her lips, crossed her arms and gave us the evil eye. No matter how much we reassured her that we were just passing through and not there to do any OT work, she refused to respond to us until we got her out of there. We're going to have to talk to her rehab folks and see if we can get them to give her her OT therapy in another room since she has developed what appears to be a pure hatred for that room. LOL

Coming up this week, we're looking forward to the plans to get her into the pool to help work on her balance. As well, LaDonna is scheduled to make her Cyndi Lauper hair do a bit more up to date and we know the princess will appreciate looking pretty again. (When Brenda flipped open her laptop yesterday Mandy was able to see her reflection in the screen while the computer warmed up. She gazed at her self and said,"My hair is sooo short.") We'd like to thank everyone that continues to visit. We know that seeing familiar faces helps her in the healing process. And for those of you who haven't been able to visit yet or haven't visited as much as you like, don't feel bad. We know it's the holidays and a been a tough time to visit. We know everyone is thinking about her. Feel free to schedule time as you are able.

For a housekeeping item, does anyone have her Scotland scrapbook? We bring her in her scrapbooks to help her reconnect the dots. But we haven't been able to find the Scotland one and thought maybe someone might have borrowed it? If you have it, please contact Kurt.