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.