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.