Taylor had a long day today. Last night the doctors tried to stop her sleeping medicine and she did not sleep well last night. Taylor was a trooper and stayed awake through her whole class time. She even did the whole hour on the bike with stimulation. The doctors decided that maybe trying to take her off of the sleeping medicine all at once was to much and now they are going to put her back on it and take her off of it gradually.

Taylor had a frustrating day today. She was on a misting machine to help loosen up the secretions in her lungs so that they could clear her lungs. With the mister on it is hard for Taylor to talk and that frustrated her as well. She had her teacher come to her room for class. They did let her off of the mister to ride her bike. She is able to ride for about an hour on full stimulation. The doctors are cutting back on her meds and are stopping her feeds at night. She is eating enough during the day to avoid the continuous feeds at night through the tube in her stomach.

Taylor had a decent day. She got a visit from on of her best friends today. They played music with Taylor's music teacher and Taylor's brother Tanner was on drums. Taylor thins that her brother is a crazy man on the drums. Taylor was unable to leave her room today due to the fact that her oxygen saturation was low today. She had to be on the ventilator allday. The continued to give Taylor her breathing treatments and that seemed to be unsuccessful. She is disapointed because she hoped to go outside and see her horse Lady tommorrow. Tommorrow she is back to school and on the bike.

Taylor had a relaxing day today. Free of school and the bike. That did not mean that she was off the hook and could just lay around and watch Flicka. She had to do her range of motion exercises in her bed. Later she got to enjoy the beautiful day and go outside with only family for the first time since the accident. She had some issues with her oxygen saturation so she had to come back in early. She is looking forward to seeing some of her horses now that she can go outside. She is eager to see Lady and Blackie, her two favorites. She has continued to stay in great spirits and enjoyed a conversation with her brother this evening.

Taylor had a great day today. She went to school again today and her teachers are now realizing that she way more advanced than they thought she should be. She did a full hour on the bike and still said the stimulation makes her muscles tired. The doctors are reassuring her that sore muscles can be good. She continues to develop more and more feeling throughout her body. Although they say this is not necessarily a indication of regaining use it is still a good sign. So far Taylor has avoided the flu that has gone through the rest of her family. Her brother came down with the flu shortly after visiting her so the nurses have been watching her extra closely for any signs. She was in a great mood today and got a visit from one of her friends. She really enjoys it when they stop by and visit now that she is out of ICU.

Taylor had her first restless night in a long time. After the sleepless night she bathed, did her hair and brushed her teeth and was off to school. Only she fell asleep about 1/2 hour into the lesson with the instructor. They decided to call it a day and she went back to her room where Occupational Therapy met with her and worked on a few things with the mouth stick. She still did her time on the bike. She said that the bike is getting easier. She has regained a lot of feeling in her body even spreading down her legs. The doctors caution that feeling doesn't indicate movement but it is a good sign never the less. Taylor's brother came down with the flu so the nurses are closely watching Taylor for any signs since she was with her brother the first part of yesterday.

Taylor had a great day today. She was excited for her second day of school. Her brother escorted her to class. After her break Taylor got on the bike and rode for an hour. She is excited to be peddaling the bike even if it is with the help of the stimulators. She also got a manacure today and changed her fingernail color to red with glitter. The finished the evening in a great mood. She finished the night by having a conversation using the video confrence feature on her computer with Sheridan, one of her friends.

Taylor had a great day today. She woke up to a visit from her little brother who was climbing all over her bed. She had her first day of school at the Shriner's classroom. She said that it was boaring and she already knew the stuff. I think that she will find that they will accelerate her ciriculum so that she will have to start learning. She did time on the exercise bike today and said that it hurt her muscles. It is good that they were finally getting a workout. It was explained to her that the pain was good pain. Taylor was exausted from her long day and she relaxed in the evening watching Flicka.

Taylor had another relaxing day today. She hung out with family all day. Taylor did some coloring today and painted with a brush in her mouth. She is excited to start school at Shriners tomorrow. Tomorrow will be a big day with school, exercise and therapy. Taylor has slept all through the night for three nights in a row and she said that tonight will be the fourth in a row. Taylor enjoyed reading everyone's emails and comments tonight. She wanted to thank one of her doctors from UC Davis for keeping track of her from UCD to Shriners. She thinks that it is really cool that he is traveling to help kids in other countries.

Taylor had a good day today. The doctors are ordering her to drink more water because it is making it difficult for them to get the secretions out of her lungs without the water. Taylor had the day off from the bike and other exercises but she still had to do her range of motion exercises with her family. She continued the Flicka marathon and enjoyed drawing with her mouthstick and putting stickers on paper. She has made a lot of masterpieces.

Taylor had a long day today. She is now having to exercise a lot more than she is used to. She is enjoying her new room and has made friends with some of her new nurses. Today she rode the bike for an hour. The bike stimulates her muscles and causes her legs to work the pedals. She got very tired. Taylor was put back on her original pacing machine. It was repaired by the company and the doctors put her back on it today. They are going to test her diaphram again on Monday using the ultrasound machine to see if Taylor has any involuntary action of it. She has been laxed in reading her emails recently. There has been a lot going on and she got caught up on some of them today. She is excited to see them and to hear about the events planned for her. Taylor is still watching Flicka the movie. Taylor had a long day and did not even take a nap. She is going to call it an early night tonight and hopefully she will rest all night and wake up for a long day tomorrow.

Taylor had a big day today. She was moved to her new room on the third floor today. She is starting the process of getting used to the nursing staff and the other patients on the floor. Taylor is now able to have children visitors. She is very excited to see her friends that she has missed seeing while she was in the ICU. She also had her first workout session on the bike. She did very well and was able to do it for 20 minutes. The workout helped stop some of the reflex actions that her muscles have been having.

Taylor had a great day today. She is really enjoying playing with her new Flicka horse. She has continued her therapy and is using the mouth stick very well. She has switched formulas that she is getting through her tube and is having a lot less stomach pain. Today the staff was preping Taylor for her move to the 3rd floor. However that got postponed until Thursday for the nursing staff on the 3rd floor to get adequete training on the pacer machine. The new bike got here today. The doctors tried it on some older kids and are hopeful that Taylor will want to use it tomorrow. She is looking forward to using the new bike.

Taylor had a long day. She continued doing her exercises and was a very good patient for the nurses. She is expected to intensify her rehabilitation exercises. She is still expecting to head to a new room soon. She had a little setback due to an infection that she had. She should be moved soon and is very excited to do so. She has found her appetite and had some In and Out burger, fries and a chocolate shake tonight.

Today Taylor started off in a rough mood. That was changed when early this afternoon she got a visit from some friends of hers. Taylor was going out of her room so she got to visit with them. They got to talk and they brought her many nice gifts. That cheered her up. The nursing staff is trying to get Taylor on a strict schedule to limit the interruptions throughout the night and allow her to sleep more peacefully. They are able to eliminate some of her medications and they feel that they have found a solution to help her with her stomach pains. She ended the day talking with her brother on the computer. Her and her brother like blowing each other kisses on the computer video.

Taylor is still having a battle with being able to get a lot of sleep at night. She falls asleep but then seems unable to stay asleep. She is getting by on an average of about 4 hours sleep at night and only cat naps during the day. Doctors are a little confused with this as she is receiving a sleeping aid. She has also been having a problem with very high temperatures during the night. Her temperature is a little above normal during the day but at night it climbs dangerously high. Doctors are taking x-rays, doing cat scans and doing some blood tests to check for any infections or to try to find what may be causing this. In the meantime, Taylor continues with her therapy daily. She has been able to really gain some strength back in her neck muscles. She went from her head cocked to the left to straight and held up strong in just a couple of days of exercises. She is also feeling some sensations in her fingers. When her fingers are squeezed she can not only tell you she feels the squeeze, she can identify which finger you are squeezing. This has raised everyones hopes and spirits immensely. Taylor continues to remain very positive. She still isn't eating all that well and her tummy bothers her often so she has lots of bothersome discomforts to overcome while waiting and working to get better.

Taylor has had many things happen since the last time we updated you. Her pacer machine started to malfunction and she had to be placed back on the ventilator. This caused a great deal of anxiety for Taylor. She did not like being on the vent. She did not sleep well because of it. Now she has a new pacing machine back and is in a great mood. Taylor has continued to get more sensation back. She is still unable to move her arms but is feeling clear to the tips of her fingers. She is now able to tell you which finger you are squeezing. Doctors caution that this is no indication of movement in the future but they say it is still a positive sign never the less. It is something that can proceed movement. The family continues to work with Taylor each day and help her to recuperate. She is enjoying talking to friends and family on her new computer. She is excited to get the bike and start more intensive rehab.

Taylor had a great day today. She was in a good mood and was excited to use her video web conferencing. She is very excited to have her very own computer. One of her pacer antennas was malfunctioning today. The doctors and nurses were unable to find the extra ones and ordered some more. This means that Taylor is back on the ventilator machine and is unable to move to her new room until the new antenna arrives for her phrenic pacer. Taylor finally started to watch a movie other than Flicka. Today she started watching Open Season. Flicka is still the favored and had a great monopoly on Taylor's TV for a week.

Taylor slept great again tonight. She got out of her room twice today. Her family met with the doctors' and they are still anticipating having her on the exercise bike near February 20th. Taylor is expected to move to her new room on Wednesday. They are waiting on a couple pieces of equipment before her new room is ready. Taylor is now able to talk and see family and friends over the internet with her new computer. Her nurses are sad that she is leaving but they are glad that she is getting better enough to be moved. She has made a lot of friends in the ICU.

Taylor woke up in a great mood after a long night of sleep last night. She got in her chair twice and was out of her room for most of the day. She is excited and is supposed to change rooms tomorrow. Taylor got to play games later and even tried her new video computer stuff that will allow her to view her class in Chico during the day. She hopes to be doing that within two weeks. Taylor is having fun learning her horse colors and breeds. She ate a hefty meal of cheese pizza tonight. Taylor finished the evening by browsing a magazine.

Taylor got little sleep last night. She has maintained her appetite and is eating well and had one of her favorites which is Mac and Cheese for lunch. She got into her chair twice today with the second time coming late in the day. The second time she got out and went down to the playroom and went and saw the huge toy train that the hospital has. Taylor remained in great spirits and was a wonderful girl all day. That might have had something to do with the fact that she had the day off from therapy and was left alone to relax today. Hopefully she will get some sleep tonight.

Taylor slept well last night. She also has found her appetite again. She ate great meals all day. She got into her chair twice today. Taylor has watched Flicka non stop. She has been in a great mood all day. She got a chance to read and respond to her emails and really enjoyes reading the email and comments from everyone. Her trach has been capped and she is no longer using the passsy-muir valve to increase the oxygen. She is breathing normal air with only the assistance of the phrenic pacer. Taylor is becoming more mobile and is able to leave the room with just her family members once they are signed off on trach change and suction techniques.

Taylor continued her sleepless ways. The doctors have elevated this to the top of their list. They are going to change her medication to a new one to help her sleep tonight. Taylor still eats very little on her own. The Doctors are continuing to feed her through the tube in her stomach. She got into her chair twice today and continued her Flicka marathon. The did her daily exercises with physical therapy and occupational therapy.

Taylor had another sleepless night. Today she is got into her chair twice. One of those times was to go down to the playroom and watch a play that was being put on. She continued her Flicka marathon. She also got a docking station for her iPod so that she could listen to soft music at night. She should sleep well tonight.

Taylor was in a remarkably cooperative mood today even after staying up all night. She was visited by her nutritionist with concerns about Taylor's diet. They are concerned that she may be losing weight. She has made a deal with them to eat more. Doctors have said that due to her injury she has some abdominal discomfort that is causing her to feel like not eating. Taylor still did her exercises and was visited by occupational and physical therapy. Taylor's family got trained in how to replace her trach today. The training was done on a CPR dummy. Taylor got a great surprise today. Flicka the movie with Tim McGraw went on sale today. She was the first to have it. Hers was purchased for her about 5 minutes after the store opened. She has been waiting for the movie for months. She got it early this afternoon and the nurses later said that it was Flicka marathon day. She has already seen it at least three times. Not only is it her favorite movie but it has her favorite song and video on it which is "My Little Girl" by Tim McGraw.

Taylor's family met with the doctor's today. They learned that Taylor is expected to move to the normal rooms later this week and out of the ICU. She will start on the bike shortly after it gets here on the 20th of this month. The family will start meeting with the doctors in a meeting once a month to review Taylor's care. Taylor did her exercises and worked with some of the oral tools that she will need to learn to use. Taylor got a visit from Pastor Pamela and colored with here for quite awhile. Taylor is still struggling with the cold and had to have the intensity of her pacer increased because her lungs were not fully inflating. The doctors have taken steps to rectify the problem and believe that things will be fine in the morning.

Taylor was not having a great day today. She had to do her exercises. She has had a lot of anxiety lately. The doctors are looking to do everything they can to make sure that she reduces her anxiety. Taylor got a visit from her music instructor. She came with a cart full of instruments to play for Taylor. She might have been cranky because she was unable to watch the Super Bowl in her room. She wanted the Colts to win because they were associated with horses and she liked the horseshoe on their helmet. Although she is a Broncos fan the Colts are a close second. Tomorrow the family will meet with her doctors to get an update on Taylor's rehabilitation. Taylor may be able to get a visit from one of her horses in the near future. Taylor got to read the comments from Mrs. Garcia's 6th grade class the other day and she really enjoyed reading them. She also enjoyed finding out that she will have a new baby cousin.

Taylor had a long day. She did not sleep last night. She made up for it today. She slept for 5 hours today. She continues to be on antibiotics due to the cold and slight fever that she has. Taylor's family is meeting with the doctors on Monday to get an update on Taylor's condition. They are still planning on her starting the exercise bike in a couple weeks.

Taylor was in a good mood today. She got to play with child life. Her physical therapy went well today. They continued to stimulate her arms. Later they will take her down to the playroom once she is in her chair. Today she was started on antibiotics to treat the cold that she appears to be getting.

Taylor had a tough day today. She got little sleep and the doctors feel that she is coming down with a cold. She got a little sleep today but was still exhausted. They were still having her do her exercises to keep her strength. She enjoyed her new trach and how easy it was to talk with it. Her discussions are really effortless now. Hopefully she will get some sleep tonight and wake up rejuvenated and ready for the day.

Taylor had a very busy day today. She did the stimulation with her legs and arms. She went down to the playroom for a little while. She even had her trach changed today to a smaller one. The new trach is easier to clean, smaller and does not rub her chin like the old one. Since she is now on full time pacing they will soon cap the trach and only use it for emergency purposes. Today Taylor also got a visit from the wheelchair place. She got to customize her new stroller wheelchair. It will be Princess Red with a Black back and her name written in Pink. She is very excited. Taylor also got a special visit from Debra one of her favorite nurses from UC Davis. Debra stopped by and visited with Taylor for a while and caught up. Debra was very impressed with the progress that Taylor has made since leaving the medical center. She got an earful now that Taylor is speaking so much better than when she was at UC Davis.

Taylor did not sleep well last night however she was in a great mood. She was given some Visa gift cards to shop with on the Internet. Taylor took a nap later to recharge. She was visited by child life and drew some pictures and was even able to draw the letter T very well. She continued her stimulation exercises and did very well. She got some new braces for her feet. Her exercise bike will be here in a couple weeks for her to start her activity based rehab. She started the day on the phrenic pacer and will now be on it permanently.

Taylor was overwhelmed today by the pictures and videos from her benefit roping yesterday. She was amazed to see all of the trailers and people at the arena. She really enjoyed reading the get well wishes that people wrote on the posters. She also enjoyed each gift that she received. Everything about the day brought a smile to her face. Taylor and her family truly appreciate all of the support that was given at her roping. It is inspiring to see the roping community that Taylor loves open their hearts and show how everyone cares for one of their own.

Today Taylor was on the pacer for 14 hours. She slept most of the day. Even though she went to sleep early last night she did not stay asleep long. Today she was able to squeeze in some physical therapy between naps. She continued her stimulation on her arms and legs. Her left shoulder has been showing signs of improvement and has gotten as strong as her right shoulder recently. The stimulation has been working on her legs and the doctors are eager to start Taylor on the bike in the middle of February.

Taylor's benefit roping was a huge success today. The turn out was tremendous and everyone had a great time. Thank you all who attended and made the event so successful. A special thanks to all that helped organize the event.

Taylor had a good day. She was on the pacer for 12 hours today. She got to go to the playroom and was even able to decorate some cookies. She had some visitors stop by as well and she had a great time. As she is on the pacer more she can have younger visitors in the playroom area. Her spirits remain high. She did her exercises and got to bed early tonight.

Taylor was very tired today. She had little sleep last night. She must have been so excited she got her nails done again to sleep. Now her nails are red instead of blue. Taylor paced on the pacer from 8 am until 6 pm tonight. She did very well. She slept most of the day. She finished the night with some pasta and reading everyones emails. She was still tired after sleeping all day, the nurses are hoping that she will sleep tonight. She better save her strength because she is going to be on the pacer for 12 hours tomorrow.

Taylor was very surprised to hear about the turnout at the spaghetti feed last night. Her family is very appreciative of every ones generosity. They want to thank everyone that helped make the night a success. It is a great testament to the community to see such a turnout for on of their children in need. The support from the dinner was more than anyone could have dreamed. The food that was supposed to last all night was looking sparse 30 minutes into the night.

Today Taylor spent a lot of time out of her room. She is going to the second floor a lot and playing with the other kids. She continues to do her exercises and stimulation. The doctors have increased the amount of time that she spends on the pacer and off of the ventilator. Tomorrow they are expecting Taylor to be on the pacer and off of the ventilator from 6 am until 8 pm. She is handling it very well. She has regained her appetite and tonight had a tuna fish sandwich and pizza.

Taylor had a great night last night. She woke up this morning in a great mood. She was eager to get out of her room today. She sat in her chair for over 3 and a half hours this morning. One of those hours was on the phrenic pacer. She did her usual exercises with the therapy doctors and then later got back into her chair and went downstairs to watch the ballet in the playroom. Taylor said that she hopes everyone has a good time at the benefit spaghetti feed in Colusa this evening.

Taylor woke up to a breakfast of toast with mixed fruit jelly this morning. After breakfast Taylor did her stimulation therapy. Taylor had two sessions of using the phrenic pacer today. Each session was an hour long and the doctors will add an additional hour to the day tomorrow. Tomorrow they hope to get her out of her room without the ventilator and only the phrenic pacer. She has had a strong appetite lately and has been in a great mood. Today she also made a fort that covered her with a blanket to hide from the nurses. Unfortunately they still found her.

Taylor woke up this morning to the task of getting into her chair and breathing on the phrenic pacer for 30 minutes. She did great on the pacer and even allowed for the tubes to be taken off and have a valve put on her trach to allow her to talk even easier. She did great. Later in the afternoon she got back into her chair and went down to the playroom on the 2nd floor to watch a puppet show.

Today Taylor was in a great mood considering she got little sleep. She got her toes repainted today because she did not like the color. She was playing with the Child Life specialists this morning. At about 10:30 the doctors came in and prepped her for sitting in her chair and running the Phrenic Pacer. She did great on the pacer and it was working fine at a setting of 2 instead of the usual 5 or 6 the doctors expected. Taylor was comfortable on the pacer and tomorrow they will leave her on it for an hour.

Taylor slept well last night for the first time in a long time. She got her hair washed today. She also got a pedicure and a manicure today. She got a little break from her exercises today. She got in her chair once at the end of the night. She did not go outside of her room to see her brother today. She wanted to stay in her room in the chair. Tomorrow the doctors are anxious to get her phrenic pacer going. The family doesn't know what time they will try her phrenic pacer. All is expected to go well. Check tomorrow for an update on how Taylor liked the phrenic pacer.

Taylor still is not sleeping well. The doctors are working to get her figured out. She did great with her exercises today. She got into her chair and was able to go to the floor where the playroom is. Tomorrow their goal is to get her to go outside. She has continued her therapy each day. She is a little cranky sometimes but is doing what the doctors tell her. Today she played go fish with one of the child life specialists and Taylor beat her and won a spinning top. Now that she can leave her room she will be able to see her brother Tanner. She has missed him and he has asked to see her on many occasions. Taylor has been eating and drinking well. She has also been talking well and is talking the ear off of any person that enters her room.

Taylor slept in today. It was probably a combination of not sleeping well last night and the fact that she knows the doctor's come do her exercises in the morning and she was trying to sleep through that. She did not get to skip the exercises. For the first time since she was at Shriner's she got out of her room. She was in her stroller and got to go outside of her room in the main nurses area. She took a little nap in the afternoon and then played with the child life specialist and had more rehab with electrical stimulation of her muscles. She has been doing very well and trying very hard with her exercises. She is still on schedule to start using the phrenic pacer on Monday. Taylor wants to thank everyone for all of the emails and comments on her site. She has enjoyed reading them.

Taylor had a good day today. She worked really hard with the physical therapy today. She got up at the side of her bed and sat there twice today. She even got into her chair for a little while today. She developed a leak in her IV and had to have it replaced in her hand. She finished the evening in a great mood and was talking past her trach with ease. She was in a teasing mood.

Taylor had an interesting day today. She is thoroughly enjoying being able to talk again. No more stares and puzzled looks from family trying to read her lips. We are able to know her desires loud and clear. She was able to visit on the phone today instead of just listening to callers talk to her she got to input her opinions as well. She worked with physical therapy today and they attached small stimulators to her arms and made them move. She seemed fairly impressed with the whole procedure and was anxious to share the news with any visitors. She said that the stimulation didn't hurt and it felt good to move her arms. She had a visit from a friend that plans on attending her benefit roping and she informed him that she would prefer that he rope with a pink rope so he was headed home to place an order for a pink rope. She, as has been her style, stays in great spirits and loves to tease and play pranks whenever possible. Her great attitude makes it so much easier for the family to deal with her hardship. She takes what she is being dealt in stride and makes the most of any little thing she gets to do. She is still looking forward to being able to get out of her room and venture to the play area and the other parts of the hospital and see what's out there. All in all, another pretty good day!

Taylor had a great morning. She got an early morning visit from a friend of the family from Elk Grove. Also today the doctors changed her trach to a different one that allows her to talk easier. She was able to talk before but only on a limited basis. Now she is talking easily and all of the time. The family told the doctors they might want to keep the other trach handy because Taylor can really talk a lot and they might want to reinstall the one that quiets her down. Taylor was very excited to have the ability to talk and she had her first real conversation over the phone since the accident today. She continued her muscle stimulation and exercises with the physical therapy doctors. Taylor called it an early night tonight because she slept very little last night.

Taylor has had a great day. She got a lot of exercises done early this morning. Taylor was very artistic and was drawing on her computer using the stylus in her mouth. Today the doctors used stimulators to flex Taylor's muscles in her shoulders. They said that she did very well. This evening child life stopped by to play with Taylor. She was having them help her with a scrap book that she started. The doctors removed the bandages covering the implanted devices from the surgery. They are little bulges uder her skin that are not very noticable. The doctors told the family that they will start using the installed pacer next Monday. All in all Taylor had a relaxed and enjoyable day.

Taylor had a great day today. She got a lot of visitors. She got into her chair a couple of times. Some of her day was filled with watching movies. She really enjoyed checking the emails that people have sent her as well as reading the comments on this page. She got to spend a lot of time with child life today. They came back a second time tonight to paint with her. Taylor also got her nails done today and her new paint on her nails look great.

Taylor got little sleep the last couple of nights. However she is still in a great mood. Taylor enjoys playing on the computer. She reads all of the emails and enjoys replying to them. She now has a LCD projector in her room so that she can have the computer screen fit on a big wall that makes it easier for her to see. Taylor also likes watching movies on the big wall. She definitely has the coolest room in the ICU. She has enjoyed getting chocolate milkshakes while she watches movies on the wall. This morning she found out that it is not all fun and games. She did her exercises and worked very hard at them. She did the stomach crunches and shoulder exercises on her own. After her workout she hit the showers, or at least got a bath. She is planning on getting into her chair at least twice today. The doctors came by and discussed altering her sleeping medication to help her sleep. They also said that they plan to have her start on the phrenic pacer on the 22nd. They mentioned that they will start at 30 minutes and bump it up about a half hour each day. The hope to have her breathing using the phrenic pacer 24/7 within 2 weeks of starting to use it.

The doctors tried to move Taylor to her chair today. She got in her chair without incident. She sat in her chair for about an hour. She got a visit from Child Life today and enjoyed doing some craft activities. Her temperature has been normal today. Taylor had a great day today after not sleeping much last night. She called it early tonight. Hopefully the nurses for tomorrow get their sleep tonight.

Taylor was in good spirits this morning. Her main doctor just returned from a research meeting at the Philadelphia Shriners Hospital where he spent some time discussing Taylor's case with other doctors in the field. He checked in with Taylor this morning and said that she looked well. Taylor is still running a little fever and is on medicine to reduce it. Taylor had a visit from the hospital teacher and is continuing her education. She tried to get into her chair but was placed back into bed when her heart rate dropped. Doctor's feel it may be to soon after the surgery and that her body was telling them to wait.

Taylor had a relaxing day today. She slept in and started off in a great mood. Taylor got a visit from "Pinball the Clown". She ran a little bit of a fever today and the doctors are giving her antibiotics in the off chance that it is an infection. Taylor has started to eat some food again today. She gave up her ravioli's for pizza tonight. Taylor enjoyed watching country music videos on the computer and some new DVDs that she got on the TV. Just before bed Taylor had a relaxing bath. She is getting closer to the day when they are going to start testing her phrenic pacer. She is looking forward to getting out of her room in the ICU and in a normal room in the hospital. Taylor is looking forward to seeing her friends again once she makes the move.

Taylor had a good night. She slept well after the surgery. She is still trying to adjust to the differences in the hospitals. At U.C. Davis she got used to the nurses not bothering her at night. At Shriners she gets woken up every four hours for a breathing treatment. She woke up in a grumpy mood and was not interested in anything that the doctors or nurses had in mind for her. Taylor even turned down a visit from "magic the clown". Later she cruised the internet and her mood changed after listening to some music and playing. She later asked for the clown and finally realized how much pull she has in the hospital when they announced over the loud speaker to have the clown report to Taylor's room. Taylor also got a visit from the hospital teacher who said that she would contact Taylor's teacher in Chico and keep her going with her school work.

Taylor woke up eager to get her surgery out of the way. Her doctor came buy to discuss the surgery with Taylor and her family. She wanted some juice this morning and is unable to have any until after the surgery. Taylor had her own photo shoot this morning. The family was asked if Taylor could be photoed for research purposes and also for the Shriner's magazine. The family was promised that her photos would not end up on any billboards or mass media communications, so they agreed to let Taylor be photographed. Taylor continues to collect little cardboard boxes from each time they suction her. She has collected 23 boxes so far. Sometimes Taylor asks for suction just to collect the little boxes. Taylor is getting used to the nursing staff here at Shriner's however she says that she really misses the great nurses that she had at U.C. Davis. Taylor came out of her surgery today in a great mood. The surgery lasted about 5 hours and the doctors said that everything went perfectly. The pacer implants are functioning as expected. Taylor is unable to eat for about 2 days. Taylor has said that the first thing she wants to eat is pasta with the white sauce. The doctors expect to start using the pacer in about 10 days to two weeks to give Taylor's body time to heal. Once they start weaning her they expect to have her off of the ventilator within 2 weeks.

Taylor was in great spirits today. She continues to be in the best of moods given the situation. All of her new nurses are already very impressed with Taylor. She has continued to get into her chair and sit even though she can't leave her room. Today Taylor got her nails done. She choose a light blue with sparkles for her fingers and toes. She has regained her appetite and had a great lunch of fruit and a cheese quesadilla today. Taylor continued her appetite into the night eating her chicken nuggets. After her dinner she did some shopping online at Target.com with a gift card from the Burnett family. Taylor is aware of her surgery tomorrow and is eager to get it over with.

Taylor had a good day today. She is adjusting to her new surroundings and her new nurses. She is handling the move and adjustments with the same remarkably wonderful attitude as she has dealt with everything else during this entire ordeal. Her new room is MUCH bigger than her old one. Taylor's room is currently in the Burn ICU unit at the hospital. This is due to the fact that they have more staff that is capable of handling the ventilator. Currently she can not have visits from children. The hospital does not want any outside kids in the burn unit. Taylor's family is hopeful that she will be out of the burn unit within a month so that Taylor's friends may visit her again. She is on the fourth floor at Shriners which gives her a bird's eye view of her ex-hospital. She has a huge picture window looking out toward UCD Med Center. She got in her chair a couple of times today but she is confined to her room because of the VRE bacteria that she has. They will test her again soon to see if she is still carrying the bacteria or not. If she tests clean then she will be able to get out and around more but for now she has to travel within her own room. She had a much better appetite this evening. She ate almost all of her green beans, some of the french bread and some of the honey dew melon that came with her dinner. Shriners doesn't have the internet so she isn't able to do any surfing or checking of her e mails for a couple of days but the first of the week we plan to have that problem remedied and she'll be back to browsing again. On Monday she is scheduled to have the phrenic pacer put in and the doctors expect her to be a little sore and quiet for a few days after the surgery. When she is healed up from the surgery they plan to start her with a little more physical therapy and hopefully she will be able to be off of the ventilator for longer periods of time each day. She has to be gradually weaned from the ventilator.

Taylor woke up excited for her big day. She wanted to move to the more kid friendly Shriner's Hospital. Taylor is currently in the Burn Unit ICU due to the fact that they need to care for her ventilator. She is expected to move out of the Burn ICU unit once she is weened off of the ventilator in about a month. Taylor was moved just after noon to her new room. She was excited about the view. Taylor can see the helicopters land on the roof of the U.C. Davis hospital next door. Also her room is about three times the size of her old one. She has been very pleased with the nursing staff at the new hospital. She settled in for the night with a tummy full of pizza and watching a movie. She is scheduled to have her Phrenic Pacer surgery on Monday.

Taylor finally has her future move figured out. She will be transferred to Shriner's across the street tomorrow and await her phrenic pacer surgery on Monday of next week. The Philadelphia Shriner's hospital is sending a bike to allow Taylor to do the "activity based rehab" that is similar to the Christopher Reeves Center. Taylor and her family are excited to get this type of treatment so close to family and friends here in Northern California. Taylor's nurses are sad to lose Taylor but they are excited for her future. She has made many friendships with the nurses that have cared for her and many of the nurses have promised to make the trip across the street to visit Taylor. Taylor is excited for the move. She is looking forward to the kid friendly environment. Taylor has been adjusting to her new wheels and is getting more excited about her trips in the stroller. Her appetite has gotten better and continues to improve. She had a dinner of salad and tri tip tonight for her last dinner in the Pediatric ICU in.

Taylor got a good night's sleep again last night. She had gone for trips in her new stroller twice yesterday and managed three trips in it today. One of her trips even included a swing outside. Today the family had a meeting with Taylor's doctors and discussed the pros and cons of the Christopher Reeves rehab facility vs going to Shriners as well as the pros and cons of the phrenic pacer. After weighing all the information the family has decided to stay here in Sacramento and have Taylor transferred to Shriners. She will have the phrenic pacer put in and if she improves enough that she is able to breathe on her own the pacer will simply not be powered. The doctors assured the family that they could pursue aggressive rehab here comparable to what the Christopher Reeves Foundation had to offer. They have also contacted the Philadelphia Shriners, which the doctor at Christopher Reeves is affiliated with, to obtain the bicycle that the Christopher Reeves Foundation uses in their rehab program to make the exercises Taylor will be doing as progressive as what they would have been back in Maryland. Taylor also had a great appetite today downing half of a cheeseburger. She continues to remain in remarkably good spirits, continuing to be the prankster that she has always been.

Taylor had a great night sleep last night. She woke up this morning to some exercises and a bath. The family talked to doctors at the Christopher Reeves center to arrange for her transfer to their facility. The transfer people from each facility are speaking and are waiting to hear back from the insurance company for approval. Taylor received her new loaner stroller while they build her a personalized one. She was less than impressed but she got to go places that she couldn't in her cardiac chair.

Taylor stayed up late last night to see the fireworks to start the new year. The family continued to talk to the doctors at the Christopher Reeve's Center. They are wanting to hold off on installing the Phrenic Pacer. They are optimistic that they can get her breathing on her own again. They also would like to run some MRI's and the installation of the pacer makes that impossible. Taylor my be proving them right. Last night she was working and made some breaths on her own. She worked hard at it but the ventilator machine indicated that she did indeed take a few breaths on her own when she tried. She also showed some promise in her leg movement. When the nurses came to cath her Taylor said no and closed her legs twice. It is still unclear as to whether this was intentional by Taylor, the nurse thought so, or if it was reflex. In any event the fact that both legs moved at the same time without stimulation is a great sign of possibility in the future. Today she got in her chair in the morning after breakfast and did some exercises with the occupational therapy nurse.

Taylor got right to work this morning. She had her family put more pictures on the ceiling for her to look at. She was having fun making her Grandma move back and forth across the bed to put the pictures up on the ceiling. Taylor was sitting up early and started the day with a healthy breakfast consisting of Pizza. Her family is considering having the Phrenic Pacer surgery put on hold until they receive a second opinion about the surgery from the doctors at the Christopher Reeve's Foundation. Taylor's family is still working with doctors at the foundation to organize her admitted to their facility.

Taylor woke up in a playful mood. She got a bath this morning and her hair smelled great. Taylor was in and out of her chair today and was doing her sit ups. She watched some of her favorite movies and had a relaxing day. Last night the tube in her stomach fell out and the nurses inserted another one. Today they did an x-ray to make sure that the new tube was in the correct place before using it to feed her or give her medicine. Taylor continued to be in a great mood all day. She finished the evening with a slice a pizza, a gift of a painted horse called Crystal and by drawing pictures for her family.

Today Taylor continued her exercises while in the chair. She was doing her sit ups. She also was excited to see the doctor that was to fit her for a stroller and not a wheelchair. Apparently now with kids her age they have a stroller like device instead of a wheelchair for mobility. The family also is one step closer to having Taylor admitted to the Christopher Reeves Foundation Hospital in Baltimore, MD.

Taylor has had a good morning. She has been getting in the chair with her usual reluctance. After the discovery of her ability to do sit ups there has been a new task added to her usual chair routine. She has been doing her sit ups very well. Today the family also learned that her phrenic pacer surgery has been approved to be done at Shriner's hospital. This has been up in the air but now looks to be finalized.

Taylor had a good morning. She was visited by more family and friends. Yesterday she got a visit from the Garcia family in Colusa who brought her a special blanket and her now favorite movie "The Fox and The Hound 2". This morning she is doing more bead work with a family friend. Recently she picked the beads and had her friend make a necklace and earrings. It turned out beautifully. She is excited about the task today. She is moving in and out of her chair with nurses help. Taylor is also enjoying her daily visits from the Family Life personnel at the hospital. Today Taylor has good and not so good news. First the good. Taylor while becoming increasingly angered by being in her chair and wanting in her bed did 3 stomach crunch like sit ups. This was done in front of one of the nurses that noticed it was a conscience effort by Taylor to prove to them that she was going to get back in bed whether they were going to help her or not. The whole family was very pleased to see Taylor's determination and actions. The not so good is that Taylor has a bacteria that is resistant to most common antibiotics. This is something that the doctors say will not threaten her health but makes it more difficult in treating her with antibiotics. They will have to find a different one that the bacteria will not resist. Taylor will have this bacteria with her for life. They continued to emphasize it is not a threat to her or any healthy person around her. All in all the Family feels that it was a successful day.

Taylor has developed pneumonia and a urinary tract infection. She also has continued to have gassy stomach pains. She did sleep well last night. She has been in a good mood during the day. She made trips to the chair and also sat in an arm chair in her parents arms at different times. Her appetite has returned and she had some pizza today.

Merry Christmas! I know that it has been a couple of days since our last post about Taylor. Some people procrastinate and had to get their last minute shopping done.

Taylor has had some ups and downs over the last few days. She has had some good sleep but she is fighting a touch of pneumonia. She continues to have gas after her feeds that cause some discomfort in her stomach. Her doctors are venting her tummy to allow the gasses to escape. Some other plans have changed. The way it looks now she will have her phrenic pacer surgery at UC Davis instead of Shriners. Taylor is expected to move to Shriners shortly after her surgery for recovery. There was some rumor that she will have the surgery this week but that is yet to be verified to the family by the doctors. She continues to be in great spirits and has had numerous visits from Santa. Taylor really enjoyed her Christmas and has been in great spirits today.

Taylor has been in great moods lately. She has gotten her hair braided and is now getting dressed in her clothes each day. She is continuing to listen to the therapists and work towards getting better. Today she said that she felt people touching her arm on the forearm. This is a new sensation and Taylor is very proud that she can feel it. The doctors cautioned the family on getting to optimistic since the feeling sensation and movement are not related. However at this point the family is happy to see improvement of any kind and are very optimistic and proud of Taylor. She has had a lot of visitors that continue to stop by and Taylor and her family want to thank all who have visited, donated, and sent mail or email to send their best wishes. Everyones support is greatly appreciated by Taylor and her family.

Taylor was in a great spirits this morning. She played on the computer and joked with people in her room. She is getting into the chair twice a day working towards getting into the chair 3 times next week. Today doctor's from Shriners are coming to visit with Taylor and evaluate her for addmitance to their facility and her rehabilitation prospects in the future. She is excited about Christmas and excited to open all of the presents that she has been receiving.

Taylor slept well last night and woke up in a great mood. She has been having some discomfort due to gas building up in her stomach. She has enjoyed having family members lay in the bed with her. She likes to cuddle with them. Taylor has been watching movies and playing games. She continues to keep her spirits high for the most part. Getting into her chair is not a favored task for Taylor during the day. Again it is explained that it is for her own good and she still doesn't care. She just doesn't like to be moved. Taylor got a visit from her brother this evening. She was excited to see him. He was able to get her to start talking around the trach so that she doesn't have to rely on mouthing the words. She is learning to get air by the trach and is now speaking sometimes. She had a great time playing with her brother.

Taylor had a sleepless night last night. Despite that she has been in a great mood today with a few exceptions. She was joking with the nurses this morning and had fun. Her first Internet shopping purchase arrived. It was a game called "Stare". She is already a pro at it. She beat her dad in the first game that she played. Later she got a visit from Santa. Santa and Mrs. Clause dropped off presents for Taylor. She was only allowed to open some of them. She was told to save the rest until Christmas. The part of the day that she did not like was the move to the chair. The nurses were very unpopular at that point. Later when she was back in bed she focused on her exercises. She got a lot of flowers today. She is still unable to have them in her room but they keep them in the hall for her to look at when she travels in her chair. Taylor will have another trip in the chair today and then hopefully a relaxing evening.

Taylor got some great sleep last night. Hurray 2 in a row. She was in a great mood. She was coloring by holding the markers in her mouth. Taylor's mood quickly changed once the nurses started telling her what she needed to do. One poor nurse got the brunt of Taylor's frustration. Taylor later told the nurse that she was sorry. She got into her chair twice today, did her exercises, and worked with occupational therapy on other tasks. After all of that she took a nap and then had a great evening.

Taylor got a great night sleep last night. She was in a tremendous mood when she w0ke up. She was laughing and mouthing to everyone. She looked at horses on the Internet and showed some of the nurses the new Internet videos that she had found. Taylor had a lot of visitors today that got to see her with her raised spirits. She sat in the chair for quite awhile and was happy to do so. Her good mood continued into the night. She read a lot of emails that had been sent to her. She is trying to respond to them, however she can only handle responding to a few at a time. There was no new news with the doctors. Most of them have the weekend off.

Taylor had a very sleepless night last night. Maybe she was thinking of the visit she had from Santa Clause right before she went to sleep. The doctors increased her dose. They want to give it a few days before they try something else. Taylor was in good spirits today and was looking at horse figurines that she liked. She has a lot of scheduled visitors today. I am sure they will wear her out and cause her to sleep a lot tonight. Taylor sat in the chair for a whole 2 hours today. Xaviar, a friend of Taylor's from school visited her today and dropped off a few presents.

Taylor got little sleep last night. The doctors are trying to find a sleep medicine that will help her sleep well. They have altered her breathing treatments so that they take less time to complete. She is handling them much better than she was before. Taylor has been sleeping most of the day today to catch up on last night. Hopefully they can get her to sleep tonight.

Taylor got a great sleep last night. The treatments that were causing Taylor such anxiety are now a breeze since they have prefaced them with a relaxing drug to make them more tolerable. Taylor is getting to see a Family Life counselor and a Physical Therapist everyday now. Taylor's breathing has improved on the ventilator and the machine is not having to work as hard to sustain her breathing. She went for a ride in the chair and got to see the outdoors again.

Taylor got a great night sleep last night. She started work early today. As soon as she woke up she started physical therapy. She did great and was very patient while the doctors worked her arms and legs. Taylor was able to help them with her jaw and her neck. She was even able to do the exercises where she shrugged her shoulders. Shortly after her exercises Taylor got a breathing treatment, which is her least favorite thing to do. Taylor is excited to have a lot of visitors scheduled today. Her friends Madison & Sheridan are stopping by. Taylor's friend Madison brought her some Christmas presents today. Taylor's dad let her open a few but made her wait until Christmas with some of them. Sheridan and Taylor had fun. Sheridan wanted to stay the night but her mom made her go. Taylor had a long day and it looks like she is going to sleep well tonight.

Taylor woke up in a great mode today. She was all smiles and was in a joking mode. She had a good night sleep. She started the morning off with a requested cinnamon roll. After breakfast she had her trach changed, her teeth brushed and face cleaned. She followed up with a little shopping online. The nurses say that they plan to get her into her chair and take her for a little stroll. Taylor had time to sneak in a afternoon nap prior to the ride. Taylor reluctantly went for her ride today. She was in the chair for about 45 minutes but she did not leave the hospital due to the weather. Today the family found out that Taylor will be transferred to Shriners early in January. She will be the first patient accepted on a ventilator. The same team of surgeons will do the Phrenic Pacer procedure in the Shriners facility. Taylor's doctors are excited about the move. It is a more modern facility and is much more "kid friendly". In the afternoon Taylor read some of the wonderful emails that people have sent her. She is trying to respond to them when she gets a chance. Thank you all for your overwhelming support for Taylor.

Taylor finally got a great night sleep last night. She has figured out that they don't do her breathing treatment if she is asleep. So sometimes even when she is awake and she sees them coming with the breathing machine she pretends that she is asleep. Taylor being the dedicated person she is plays it out until they hook up the machine hoping that they will go away. This morning Taylor did some shopping on the Internet. She got a pair of comfortable pajama bottoms. She got a visit from Occupational Therapy but was reluctant to use their "mouth wand" to type on the computer. They let her out of it but they will be back later today. Even after her good night sleep last night it looks like she will sleep a lot today. She has got a lot of catching up to do. Taylor did a lot of work today. She did numerous exercises on her legs and arms. She is not a big fan, however nurses explain that it is for her own good and she still does not want to do them. Then they politely make her. Preparation was made to move her to Shriners hospital here in Sacramento after her operation that is to take place in early January for the Frantic Pacer. Taylor has had quite a bit of time to surf the Internet. Click the link on her homepage to view her favorite clip she found on the Internet today.

Taylor had another sleepless night. She would wake up every couple of hours with her body shaking and saying that she was scared. Who could blame her. The doctors described them as panic or anxiety attacks. They are going to give her some stuff to help her sleep better tonight. She had a lot of visitors this morning. Her friend Olivia from school stopped by to visit her. They laid in the bed and watched "Cheetah Girls". Taylor had a great time. Later they were going to decorate her room to fit the holiday season. Taylor is continuing to eat on her own without the assistance of feeds through the tube in her stomach. The doctors also turned down the amount of oxygen that the machine gives her with each breath that it provides. Normal are is saturated with 21% oxygen and previously Taylor was set at 50%. Today they turned it down to 21%. This would allow her to breath using the Frantic Pacer only using the outside air. One of the surgeons stopped by and mentioned that it might be January when she gets the pacer put in to replace the ventilator. They mentioned that with the holiday scheduling and training Taylor's nurses it might be better to wait so that the staff does not have scheduled vacation days during Taylor's care.

Last night was another sleepless night for Taylor. They came in at about 1am to do a breathing treatment and woke her up and she never went back to sleep. She got a visit from her brother this morning and was very excited to see him. Although due to the fact that her brother is very hyperactive the excitement eventually wore off. During rounds the doctors finally decided to consider patient comfort at the request of Taylor's family. They will continue to do her breathing treatments every 6 hours and will skip them if Taylor is asleep. Her stomach has gotten better so they are allowing her to eat again and are going to discontinue the feedings through the tube in her stomach and just let her eat all of her food orally and see how she handles that. She is scheduled to take another trip around the hospital in her chair today however I think Taylor is going to make them wait until after she has had a chance to eat.

Taylor eventually got in her chair and went for a cruise in the hospital. It was not a great day outdoors so they kept their exploring inside. Avory, one of Taylor very first friends stopped by to see her. They had a great time. They laid side by side in bed as Avory read Taylor a story. She still has not slept much and she is looking like she will get a great night sleep tonight.

Taylor got very little sleep last night. So as usual when she wakes up with little sleep she was cranky this morning. Really at this point who could blame her. She had a little fever last night and they were taking x rays and cultures to determine what is causing the fever. Taylor has been drinking a lot of apple juice and water. She has been sleeping most of the day. Taylor's stomach has been getting desended so the doctors used her stomach tube to vent the gasses in her stomach. They have also ordered that she only receive feeds through the tube in her stomach. As I am sure you are aware by now she is very unhappy at the idea of giving up pizza and other foods that she likes.

Taylor had a good day today. She was unable to eat this morning due to the fact that they had to do the test that was schedule for yesterday. She got a visit from her brother this morning and got into her chair while he was here so that he could sit on the bed. The watched TV together. At noon Taylor got another ultrasound on her diaphragm. There was no improvement in the movement under her own power however when they sedated her and shocked the nerves there was movement of the diaphragm. This made her a candidate for a pacemaker like device to control her diaphragm by stimulating the nerves. This would allow her to get off of the ventilator. There is only about 50 of these units installed in patients each year in the country. Doctors are coordinating and should be able to do the surgery in about 2 weeks. Once Taylor woke up from her sedation she immediately asked for pizza and followed it up with zucchini bread. Later we worked on her leg exercises. Taylor is still not a fan of the exercises but we explain to her that it is for her own good, and then she is still not a fan.

Taylor got a great night sleep last night. The doctors are letting her sleep more without interrupting her during the night. She woke up wanting to eat some pancakes. However she was unable to due to the fact that she has an ultrasound test today on her diaphragm. The doctors are going to check it again for motion as well as run a nerve test to see if she is a candidate for a pacemaker like device that helps her diaphragm work if the nerves are OK instead of a ventilator. Later this afternoon they decided not to do the ultrasound test. Taylor was very disapointed since she starved herself allday in preperation for their test. Tonight she had special splints made for her hands so that if she regained some movement in her arms she would be able to pick things up easier.

Today Taylor woke up in a good mood. She was smiling a lot. She was excited because her whole nursing team was female today and they said that it was going to be a "girl spa day". Mid morning her family met with a team of specialist to determine where Taylor goes from here. They were less than encouraging. The determined that there was only a 1% chance that Taylor would regain any significant movement in her arms and that was the best that the family could hope for. They said that they would train the family in Taylor's care to take her home and that she would not be recommended to go to a rehabilitation facility. The family is asking for a second opinion and wanting to look at rehabilitation options for Taylor. Over the next week outside doctors and rehabilitation facilities will be looking at Taylors material. Later in the afternoon Taylor went for a tour and again visited the outside. She also had pizza today. She was unable to eat the crust but she had the good parts. Later she continued with the "spa day" treatment and got a pedicure.

Hugs for Taylor

Please leave a comment for Taylor to read. She has enjoyed reading all of your thoughts and well wishes. Some have even made her crack a smile.