Friday, June 22, 2007
June 22, 2007
Well, Taylor is home!!! Taylor has been home for about 1 month now and is doing very very well. She is eating and drinking and is smiling a lot more. She has seen many of her friends and family and has loved visiting with them as well as being able to snuggle in her mommys bed however she doesn't like to leave her house very much. Taylor will be starting school in August at Chico Country Day. She is a little nervous about returning to school but we all know she will do great once she is there and settled. Taylor is getting ready for Christmas which the family will celebrate in the next few weeks. She has wanted to open her presents for so long and is ready for all the Christmas lights. However she insists on getting a "real" tree instead of a "fake" one. Her family is doing their best but they are pushing for the "fake" tree. Her neighbors are all wonderful and some have even started getting out their Christmas lights to put up as well. She loves spending time with her little brother and he has become such a big helper. He stops what he is doing if her foot or hand falls off her chair and runs over to help pick it up and opens the doors for her all the time. They are very good for each other. The family would like to make sure everyone knows how wonderful all the love and support has been throughout all of this. It has made the transition for them so much better. The family thanks you all so much and they will try to post again soon.
Thursday, May 17, 2007
May 17 2007
Taylor has been doing really well the past few days. We forgot to mention that Taylor has lost her first tooth. She was very excited and was so excited when the tooth fairy left her 45 cents and a little mermaid toy. She is even more excited because she was told Tues. the 22 she would be going home. She has had a smile on her face ever since. She surprised her Grandma Judy today with a visit her house and to see Taylors horse Lady. Taylor has been getting out of the hospital every day lately and really enjoying herself. As long as everything remains in good condition she will be home on Tues.
Thank you all so much for all the support and all the emails etc. that have been sent to the family. It has meant so much to them.
Thank you all so much for all the support and all the emails etc. that have been sent to the family. It has meant so much to them.
Saturday, May 12, 2007
May 12 2007
Taylor is doing well. She has spent the past few days on the vent and hasn't been able to go out. Nothing major was wrong, just a little mucus in her lungs and the vent helps her out when things like that happen. Tomorrow is mothers day and she will be able to spend a few hours out of the hospital. Her mom is so excited. Taylor was visited by Romy, a girl in Chico who had her jars all over town to help raise money for Taylor. Taylor enjoyed the visit and loves the jar Romy brought her. Taylors brother has been by several times to see her and she can't wait to get home. Hopefully only a few more weeks and the family will be home.
Some of Marsh Jr. High's students are putting on a benefit for Taylor. Nicole Hill, Corinne Kamrar, and Keleey Butterfield are putting on a benefit called "Tap your Toes for Taylor" at the Chico Theatre Company located at 166 Eaton Ave. on May 19 at 8:00 pm. Tickets are $10 a piece. The Full Force Hip Hop and Jaz company, Chico Company Ballet, and the Oliver Academy of Irish Dance will be performing. You can purchase tickets at Marsh Jr. Hig(after school), Matson and Isom, Chico Country Day preschool, or Chico Creek Dance Center. A great night of dancing, food and raffles. Any questions please call 530-345-1766.
The family continues to be thankful for all the love and support everyone has given them. Thank you all so much.
Some of Marsh Jr. High's students are putting on a benefit for Taylor. Nicole Hill, Corinne Kamrar, and Keleey Butterfield are putting on a benefit called "Tap your Toes for Taylor" at the Chico Theatre Company located at 166 Eaton Ave. on May 19 at 8:00 pm. Tickets are $10 a piece. The Full Force Hip Hop and Jaz company, Chico Company Ballet, and the Oliver Academy of Irish Dance will be performing. You can purchase tickets at Marsh Jr. Hig(after school), Matson and Isom, Chico Country Day preschool, or Chico Creek Dance Center. A great night of dancing, food and raffles. Any questions please call 530-345-1766.
The family continues to be thankful for all the love and support everyone has given them. Thank you all so much.
Monday, April 30, 2007
April 30, 2007
We have been very busy with all of Taylors discharge work and all of her progress lately but I thought it was important to update everyone on a few things. Some of you may have heard by now that the May 1st go home date is no longer havppening. I would like to update everyone as to why. Back in Feb. 2007 we contacted Enloe Hospital in Chico to see if they would take Taylor on as a vent patient. We were denied. Ever since Feb. Shriners Hospital has been working on finding a company to accept Taylor. Taylor is considered a high liability due to her vent and trach. We have had all of our other home care needs in order for weeks and rady for discharge except the vent care. Last week we contacted Enloe again for a second review. They denied us again. From what I have heard they said the y did not want to acceept new patients due to Enloe wanting to close down the In Home Vent Care program. We ceived this news last Thursday. Shriners kept going and thankfully they found a company in Sacramento who will take Taylor as a patient. Now she can come home. Many patients are not able to go home if thye can not find care in their area. Many patients move to the town that will service them. Again, luckily, the company in Sacramento will service us.
The news media contacted me for an update on Taylor as they have several times in the past. We told them about Enloe and the problem we had had with them. The media contaced Enloe to get their side of the story and were told that Enloe hadn't heard of Taylor and that they never denied us. I find it hard to believe they can deny someone twice for the same patient and never know who the person is. Since the media has contacted Enloe, I have received several messages from their rep saying how Enloe would love to help out in any way they can. I want it to be clear that we are still using the company in Sacremanto as they are responsible for Taylor coming home. As you all knwo Taylor has had her whole world turned upside down in the last 5 months. She has had to get used to nurses picking at her, different doctors, bad food, even not being able to scratch her nose if she wants to (along with many other things we take for granted.) but the whole time she does it with a smile on her face and a big heart towards everyone. And still when you ask her what she wants to do it is to go home and get in my mommy's bed. You all have been so wonderful in your love and support towards Taylor, that I feel you should be aware of not only our progress and accomplishments but also the setbacks we face that come directly from our community. I can't tell you how wonderufl the people at Shriners have been in contributing to Taylor's progress and getting home. Dr. McDonald has been magnificent and Taylor could not be in better hands. We should be home in 2-3 weeks and are blessed everyday for the continued love and support you all send our way.
On a little lighter note, Taylor had her very first day pass on Saturday!!!! It was AWESOME!!! She was able to go to see her Aunt Lissy at work, she went to lunch, she played with her cousins. She had a great time. She didn't get nervous or anything. It was one of the best weekends we have had in a very long time. On Sunday she had her horses stop by the hospital and loved it so much. She was able to feed them with her mouth!!! She was so excited to tell me how she put the food in her mouth and the horses just ate it up without biting her. She really is doing well and I know will continue to do so.
She is doing really well on her bike. She is able to stay on it for the whole hour everyday and even pushes it a little harder these days. She is hooked up to the stimulators that make her leg do the work, but she is really doing great. She still isn't eating the hospital food, she says its really bad but she is gaining weight. We are still planning to do Christmas when we get home. She can't wait. She can't believe that our neighbors have said they would put their lights up for her. We will continue to keep you posted and thank you from the bottom of our hearts for all your love towards Taylor. It is so wonderful.
The news media contacted me for an update on Taylor as they have several times in the past. We told them about Enloe and the problem we had had with them. The media contaced Enloe to get their side of the story and were told that Enloe hadn't heard of Taylor and that they never denied us. I find it hard to believe they can deny someone twice for the same patient and never know who the person is. Since the media has contacted Enloe, I have received several messages from their rep saying how Enloe would love to help out in any way they can. I want it to be clear that we are still using the company in Sacremanto as they are responsible for Taylor coming home. As you all knwo Taylor has had her whole world turned upside down in the last 5 months. She has had to get used to nurses picking at her, different doctors, bad food, even not being able to scratch her nose if she wants to (along with many other things we take for granted.) but the whole time she does it with a smile on her face and a big heart towards everyone. And still when you ask her what she wants to do it is to go home and get in my mommy's bed. You all have been so wonderful in your love and support towards Taylor, that I feel you should be aware of not only our progress and accomplishments but also the setbacks we face that come directly from our community. I can't tell you how wonderufl the people at Shriners have been in contributing to Taylor's progress and getting home. Dr. McDonald has been magnificent and Taylor could not be in better hands. We should be home in 2-3 weeks and are blessed everyday for the continued love and support you all send our way.
On a little lighter note, Taylor had her very first day pass on Saturday!!!! It was AWESOME!!! She was able to go to see her Aunt Lissy at work, she went to lunch, she played with her cousins. She had a great time. She didn't get nervous or anything. It was one of the best weekends we have had in a very long time. On Sunday she had her horses stop by the hospital and loved it so much. She was able to feed them with her mouth!!! She was so excited to tell me how she put the food in her mouth and the horses just ate it up without biting her. She really is doing well and I know will continue to do so.
She is doing really well on her bike. She is able to stay on it for the whole hour everyday and even pushes it a little harder these days. She is hooked up to the stimulators that make her leg do the work, but she is really doing great. She still isn't eating the hospital food, she says its really bad but she is gaining weight. We are still planning to do Christmas when we get home. She can't wait. She can't believe that our neighbors have said they would put their lights up for her. We will continue to keep you posted and thank you from the bottom of our hearts for all your love towards Taylor. It is so wonderful.
Friday, April 27, 2007
Update April 27, 2007
We are sorry it has been such a long time since our last update. Everyone has been very busy. It looks as if Taylor will be moving home to Chico soon. She is expected to be discharged the first or second week in May. Taylor is so excited to go home! She's looking forward to the Christmas celebration that was promised to her upon arrival. There are plans for Christmas lights, a tree, and all the presents that she received in December.
Taylor has enjoyed getting in her chair a lot more these days. She even went on a field trip the other day to the zoo. She was a little anxious at first, but was soon having a great time. Taylor has been going downstairs for school and the teacher said she is doing very well. Taylor got to get inside the family's new van the other day. The van is equipped with a lift and seats for Tanner and friends in the back.
The May 5th fundraiser is only a week away. Please join us at the Elks Lodge in Woodland at 5:30 pm for dinner and dancing. Tickets can be purchased at the door for $40 or by calling Melissa Phillips at (530) 669-7156 or (530) 666-1450.
Thanks for your continued love and support.
Taylor has enjoyed getting in her chair a lot more these days. She even went on a field trip the other day to the zoo. She was a little anxious at first, but was soon having a great time. Taylor has been going downstairs for school and the teacher said she is doing very well. Taylor got to get inside the family's new van the other day. The van is equipped with a lift and seats for Tanner and friends in the back.
The May 5th fundraiser is only a week away. Please join us at the Elks Lodge in Woodland at 5:30 pm for dinner and dancing. Tickets can be purchased at the door for $40 or by calling Melissa Phillips at (530) 669-7156 or (530) 666-1450.
Thanks for your continued love and support.
Monday, April 9, 2007
April 9 2007
Sorry it has taken so long to update everyone. Everyone has been very busy. Taylor had a great birthday. She is now 6 years old. She was able to have a "spa day" with a few of her girlfriends. The party was great and everyone had fun, but Taylor was extremely tired towards the end. She loved all of the presents and phone calls from everyone. Easter was a great day too. She was able to go down stairs and do an Easter egg hunt and even take a trip outside.
She is doing much better with her breathing lately. She has taken a few trips outside and has enjoyed them very much. She is continuing to ride her excersize bike and go to school. She is getting up more and more into her chair. The doctors are still hopefull that May 1 2007 will be the target date for going home. Taylor is thrilled!! ( so is the rest of the family) She wants to go home so bad and see all her friends and "get into my mommy's bed".
It has been a very long and exhausting journey but the family is so thankful to everyone for thier continued love and support.
She is doing much better with her breathing lately. She has taken a few trips outside and has enjoyed them very much. She is continuing to ride her excersize bike and go to school. She is getting up more and more into her chair. The doctors are still hopefull that May 1 2007 will be the target date for going home. Taylor is thrilled!! ( so is the rest of the family) She wants to go home so bad and see all her friends and "get into my mommy's bed".
It has been a very long and exhausting journey but the family is so thankful to everyone for thier continued love and support.
Wednesday, March 28, 2007
Update March 28, 2007
This is a big week for Taylor, as it is her birthday this Friday, March 30. Taylor will turn six. She is excited to see some of her close girlfriends that will be coming down on Saturday for a Spa Day at Shriner's Hospital!
Taylor and her family plan to spend the remainder of the weekend taking it easy. Taylor has moved out of ICU and is now back on the third floor. She is breathing with assistance from the pacer during the day and remains on the ventilator at night. The doctors have not determined the reason Taylor was not getting the appropriate volumes with the pacer, but everything seems to be working well now.
Taylor is back to her same daily routine of spending the morning with her teacher and the afternoon doing physical therapy. She is once again doing her physical therapy on the bike.
Tomorrow is the lunch at the Arbuckle Golf Course to benefit the Taylor Parker Hope Fund. For more information, see the March 1, 2007 blog update.
Thanks for your continued love and support!
Taylor and her family plan to spend the remainder of the weekend taking it easy. Taylor has moved out of ICU and is now back on the third floor. She is breathing with assistance from the pacer during the day and remains on the ventilator at night. The doctors have not determined the reason Taylor was not getting the appropriate volumes with the pacer, but everything seems to be working well now.
Taylor is back to her same daily routine of spending the morning with her teacher and the afternoon doing physical therapy. She is once again doing her physical therapy on the bike.
Tomorrow is the lunch at the Arbuckle Golf Course to benefit the Taylor Parker Hope Fund. For more information, see the March 1, 2007 blog update.
Thanks for your continued love and support!
Saturday, March 17, 2007
Update March 17, 2007
Taylor has been transferred back to the ICU at Shriner's. The doctors have not determined the reason that Taylor is not receiving a proper breath with the pacer, so they think that it is best that Taylor remain in the ICU while she remains on the ventilator.
The doctors have replaced Taylor's smaller tracheotomy with a larger cuff trach. The doctor's were concerned that her trach. might be leaking air and that might not be allowing her to get a large enough breath with the pacer. Taylor is still able to talk with her new trach., but just not as easily.
The doctor's plan to start Taylor on the pacer in a couple of days. They are hoping that she responds to her pacer after her diaphragm received a short break from the pacer. If she responds well to the pacer, then the plan is to place Taylor on the pacer during the day and on the ventilator at night.
We will keep everyone up-to-date on Taylor's progress. We appreciate everyone's thoughts and prayers.
The doctors have replaced Taylor's smaller tracheotomy with a larger cuff trach. The doctor's were concerned that her trach. might be leaking air and that might not be allowing her to get a large enough breath with the pacer. Taylor is still able to talk with her new trach., but just not as easily.
The doctor's plan to start Taylor on the pacer in a couple of days. They are hoping that she responds to her pacer after her diaphragm received a short break from the pacer. If she responds well to the pacer, then the plan is to place Taylor on the pacer during the day and on the ventilator at night.
We will keep everyone up-to-date on Taylor's progress. We appreciate everyone's thoughts and prayers.
Monday, March 12, 2007
Update March 12, 2007
Taylor has been doing well on the third floor. She likes her nurses and is sleeping through the night. She is also eating and drinking on a regular basis. The doctors are happy to see that she is gaining some weight.
Taylor continues to enjoy visitors, especially her friends. She was excited to see her friends Avery and Tara this past weekend. She also got a special out-of-town visit from her Uncle Brian and family.
Lately, Taylor has been having problems getting deep/full breaths with her pacer, so she is back on the ventilator until the doctors can determine the problem. The pacer and Taylor's diaphragm appear to be functioning properly, so the doctors are having to go through a trial and error process to figure out the problem. For now Taylor is staying in bed. This means that she's not able to ride her bike until doctors give her clearance.
Taylor continues to see the tutor. She's enjoying school and has been learning a lot of new words!
To call Taylor, call the Third Floor Nurse's Station at (916) 453-2156 and asked to be transferred to Taylor Parker's Room.
Thanks for your continued love and support!
Taylor continues to enjoy visitors, especially her friends. She was excited to see her friends Avery and Tara this past weekend. She also got a special out-of-town visit from her Uncle Brian and family.
Lately, Taylor has been having problems getting deep/full breaths with her pacer, so she is back on the ventilator until the doctors can determine the problem. The pacer and Taylor's diaphragm appear to be functioning properly, so the doctors are having to go through a trial and error process to figure out the problem. For now Taylor is staying in bed. This means that she's not able to ride her bike until doctors give her clearance.
Taylor continues to see the tutor. She's enjoying school and has been learning a lot of new words!
To call Taylor, call the Third Floor Nurse's Station at (916) 453-2156 and asked to be transferred to Taylor Parker's Room.
Thanks for your continued love and support!
Thursday, March 1, 2007
Update March 1, 2007 & Fundraiser Info.
Taylor is enjoying her new room on the 3rd floor. She is now in room 336. See the right side of the home page for Taylor's new mailing address. Taylor started school this last Monday. She has a private tutor and works on her schoolwork from 9:30 am to 11:30 am. In the afternoon Taylor rides her bike for about 1 hour.
Taylor has been sleeping through the night since she moved to her new room. The lights go out at night on the third floor, unlike in the ICU where the lights seemed to be on at all hours. Taylor has also been eating more, which makes the doctors very happy.
Taylor can have guests on the weekends, but the family asks that you call before you come visit. The next update will include Taylor's new phone number.
There are three upcoming fundraisers to benefit the Taylor Parker Hope Fund:
1) March 17 from 5:00 pm - 8:00 pm in Gridley at the Guardian Building. Admission is $12 for adults and $7 for children 12 and younger. Admission will include a dinner catered by Casa Lupe Restaurant. A silent auction will also be held at the event. For more information contact Julie at (530) 570-6630.
2) March 29 at 1:00 pm at the Arbuckle Golf Course. Admission is $50 per person. Admission includes a tri-tip lunch, wine tasting, and a raffle for tickets to a Kings game. A silent auction will be held at 3:00 pm for 5 nights at a condo in Kauai, 5 nights at a condo in Puerto Vallarta, use of a duck blind for a weekend, and four tickets to a Kings game. For more information contact (530) 473-3433. We would like to thank the sponsor of this event - Foothill Warehouse. If you would like to play golf before the event, please call Andy at (530) 476-2470 to set up a tee time.
3) May 5 at the Elks Lodge in Woodland. Cocktails at 5:30 pm (no-host bar) and dinner at 6:30 pm. Tickets cost $40 per person and can be purchased at the door or by calling Melissa at (530) 669-7156 or (530) 666-1450. You may want to purchase your tickets in advance because the Elks Lodge can only accommodate 250 people. A tri-tip dinner will be served and a DJ will be on-site for the dancing portion of the evening. The evening will also include door prizes and a raffle.
Taylor has been sleeping through the night since she moved to her new room. The lights go out at night on the third floor, unlike in the ICU where the lights seemed to be on at all hours. Taylor has also been eating more, which makes the doctors very happy.
Taylor can have guests on the weekends, but the family asks that you call before you come visit. The next update will include Taylor's new phone number.
There are three upcoming fundraisers to benefit the Taylor Parker Hope Fund:
1) March 17 from 5:00 pm - 8:00 pm in Gridley at the Guardian Building. Admission is $12 for adults and $7 for children 12 and younger. Admission will include a dinner catered by Casa Lupe Restaurant. A silent auction will also be held at the event. For more information contact Julie at (530) 570-6630.
2) March 29 at 1:00 pm at the Arbuckle Golf Course. Admission is $50 per person. Admission includes a tri-tip lunch, wine tasting, and a raffle for tickets to a Kings game. A silent auction will be held at 3:00 pm for 5 nights at a condo in Kauai, 5 nights at a condo in Puerto Vallarta, use of a duck blind for a weekend, and four tickets to a Kings game. For more information contact (530) 473-3433. We would like to thank the sponsor of this event - Foothill Warehouse. If you would like to play golf before the event, please call Andy at (530) 476-2470 to set up a tee time.
3) May 5 at the Elks Lodge in Woodland. Cocktails at 5:30 pm (no-host bar) and dinner at 6:30 pm. Tickets cost $40 per person and can be purchased at the door or by calling Melissa at (530) 669-7156 or (530) 666-1450. You may want to purchase your tickets in advance because the Elks Lodge can only accommodate 250 people. A tri-tip dinner will be served and a DJ will be on-site for the dancing portion of the evening. The evening will also include door prizes and a raffle.
Sunday, February 25, 2007
Update February 25, 2007
Taylor moved out of the ICU and into her new room on the third floor on Thursday. She has her own room and bathroom. Her room has nice big windows, and blue & pink walls. Now that Taylor is on the third floor she can have visitors and visitors are not required to wear smocks when they enter her room.
Taylor has a pretty busy schedule every day. The schedule is posted on her wall and begins every morning at 6:00 am. All the kids on the third floor go to school everyday. We hope that Taylor will want to join the other kids in the classroom, but if she doesn't a teacher can come down to Taylor's room.
Taylor has been doing her physical therapy everyday. On Friday she rode her bike for one hour. Taylor's stroller slides right up to the pedals on the bike. The pedals move to turn Taylor's legs just as if she were riding a stationary bike. Her legs receive electrical stimulation at the same time the pedals are moving. The bike is connected to a computer to chart Taylor's muscle function.
Taylor's new favorite movie is Flicka. She loves all of the horses in the movie. She also has a fun horse game on the computer which she really enjoys playing.
Thanks to everyone for your continued love and support!
Taylor has a pretty busy schedule every day. The schedule is posted on her wall and begins every morning at 6:00 am. All the kids on the third floor go to school everyday. We hope that Taylor will want to join the other kids in the classroom, but if she doesn't a teacher can come down to Taylor's room.
Taylor has been doing her physical therapy everyday. On Friday she rode her bike for one hour. Taylor's stroller slides right up to the pedals on the bike. The pedals move to turn Taylor's legs just as if she were riding a stationary bike. Her legs receive electrical stimulation at the same time the pedals are moving. The bike is connected to a computer to chart Taylor's muscle function.
Taylor's new favorite movie is Flicka. She loves all of the horses in the movie. She also has a fun horse game on the computer which she really enjoys playing.
Thanks to everyone for your continued love and support!
Tuesday, February 20, 2007
Update February 20, 2007
Taylor has been doing well the past couple days. Taylor is breathing on her pacer again without assistance from the ventilator. Everything is going well, so she is scheduled to move from the ICU to the third floor sometime this week. She is looking forward to being able to have her friends and brother visit her in her new room.
Taylor has continued feeling in her hand. Taylor can always tell her mom what finger she is touching. She also knows when her mom closes her hand and when her hand is open.
Taylor's bike was delivered today. The doctors will work with other patients before putting Taylor on the bike. We hope that Taylor will get to try out the new bike soon.
We hope that everyone is enjoying the great weather!
Taylor has continued feeling in her hand. Taylor can always tell her mom what finger she is touching. She also knows when her mom closes her hand and when her hand is open.
Taylor's bike was delivered today. The doctors will work with other patients before putting Taylor on the bike. We hope that Taylor will get to try out the new bike soon.
We hope that everyone is enjoying the great weather!
Thursday, February 15, 2007
Taylor had a great valentines day. She recieved so many wonderful cards, letters and pictures from all over the place. She loved looking at all the different cards people sent and couldn't believe that most of the cards she got were from people she didn't even know. She is so lucky to have so many people who care about her!
Things have been pretty mello up until the last few days. Her appetite has been increasing and she is sleeping better throughout the night. She was scheduled to move to the 3rd floor yesterday but she had a minor set back with her pacer. The doctors weren't exactly sure at first what caused the problem but they think that it had to do with the changing of the batteries on the pacer box. When the batteries are changed on the pacer box the box itself is supposed to be turned off. They think someone must have left the pacer box on when changing the batteries which led to the problem. Taylor did receive a new pacer box today and it is working great so the family is hopeful things will pick right back up. Taylor should be moving to the third floor sometime next week. This will make it easier for her brother and her friends to come and visit.
Taylor has been working hard in physical therapy. She doesn't like it but she does it. They continue to stimulate her arms and legs with a small electric stimulator. It doesn't really hurt but it does expand and contract her muscles. Her excersize bike that is coming from the Philidelphia Shriners should be here on the 20th of Feb. They will test it out on a few of the other patients at the hospital before Taylor starts on it. They want to try it on a few of the older patients and make sure everything goes smoothly before they put Taylor on it mainly because she doesn't like change very much and they don't want any problems when showing her how it will be used.
Taylor has really enjoyed the few times she has been taken out of her room to see her brother. She isn't always in a good mood to leave her room but once she is out, usually she thinks its pretty neat. Tanner really misses her and is so proud of her. When they walk around he holds onto the stroller and helps push. He tellls everyone who passes "this is my sissy". He even climbed up onto the stroller to give her a kiss.
Over the last couple of days Taylor has been able to feel her hands. Tammy and Taylor played a game the other day. Tammy covered Taylors hands with a towel and asked her to look the other way. Then Tammy asked Taylor which finger she was pinching. Everytime Taylor said the correct finger. She told her mom "Mommy I can feel my hands, and I'm not even fibing". Taylor has even been able to feel her stomach as well. Although the doctors haven't said much about the feeling she is having the family is happy and hopeful that this will be a positive recovery down the road.
Again, the family can't thank you all enough for all your love and prayers. They are asking that you continue to do so. Knowing you are all thinking of them truly means so much. It really has helped them get through this hard time.
There will be a Dinner and silent auction on March 17, 2007 at the Guardian Building in Gridley. Time and Ticket price will follow. If you need more information please contact Becky at 530-228-5861 or Julie at 530-570-6630.
More information will follow in regards to the dinner/dance being held on May 5th in Woodland.
Things have been pretty mello up until the last few days. Her appetite has been increasing and she is sleeping better throughout the night. She was scheduled to move to the 3rd floor yesterday but she had a minor set back with her pacer. The doctors weren't exactly sure at first what caused the problem but they think that it had to do with the changing of the batteries on the pacer box. When the batteries are changed on the pacer box the box itself is supposed to be turned off. They think someone must have left the pacer box on when changing the batteries which led to the problem. Taylor did receive a new pacer box today and it is working great so the family is hopeful things will pick right back up. Taylor should be moving to the third floor sometime next week. This will make it easier for her brother and her friends to come and visit.
Taylor has been working hard in physical therapy. She doesn't like it but she does it. They continue to stimulate her arms and legs with a small electric stimulator. It doesn't really hurt but it does expand and contract her muscles. Her excersize bike that is coming from the Philidelphia Shriners should be here on the 20th of Feb. They will test it out on a few of the other patients at the hospital before Taylor starts on it. They want to try it on a few of the older patients and make sure everything goes smoothly before they put Taylor on it mainly because she doesn't like change very much and they don't want any problems when showing her how it will be used.
Taylor has really enjoyed the few times she has been taken out of her room to see her brother. She isn't always in a good mood to leave her room but once she is out, usually she thinks its pretty neat. Tanner really misses her and is so proud of her. When they walk around he holds onto the stroller and helps push. He tellls everyone who passes "this is my sissy". He even climbed up onto the stroller to give her a kiss.
Over the last couple of days Taylor has been able to feel her hands. Tammy and Taylor played a game the other day. Tammy covered Taylors hands with a towel and asked her to look the other way. Then Tammy asked Taylor which finger she was pinching. Everytime Taylor said the correct finger. She told her mom "Mommy I can feel my hands, and I'm not even fibing". Taylor has even been able to feel her stomach as well. Although the doctors haven't said much about the feeling she is having the family is happy and hopeful that this will be a positive recovery down the road.
Again, the family can't thank you all enough for all your love and prayers. They are asking that you continue to do so. Knowing you are all thinking of them truly means so much. It really has helped them get through this hard time.
There will be a Dinner and silent auction on March 17, 2007 at the Guardian Building in Gridley. Time and Ticket price will follow. If you need more information please contact Becky at 530-228-5861 or Julie at 530-570-6630.
More information will follow in regards to the dinner/dance being held on May 5th in Woodland.
Sunday, February 11, 2007
Update February 11, 2007
Taylor has been busy, as always. She enjoyed watching the Super Bowl in her room while her mom tried to explain to her who Prince was. She also had a visit from Pastor Pamela, the Pastor at Tammy's Grandmother Norma's (Nonnie) church in Esparto, CA.
Taylor continues to work on her artwork. She places pens in her mouth in order to color and write. She wrote her name for the first time the other day. Taylor was so proud of herself.
Taylor always asks about her friends and family. She misses her home and continues to ask when she will be able to get into her Mom's bed again. Although Taylor is homesick, she continues to work hard and knows that she is getting better everyday. Taylor always asks about her friends and family, and wanted to write you all a note:
"Hi everyone! I miss you and I can't wait to come home. I hope I can see you all soon. I miss my toys and my Mommy's bed. Thank you for writing to me all the time. Love, Taylor"
Thank all of you for your love, support and prayers.
Taylor continues to work on her artwork. She places pens in her mouth in order to color and write. She wrote her name for the first time the other day. Taylor was so proud of herself.
Taylor always asks about her friends and family. She misses her home and continues to ask when she will be able to get into her Mom's bed again. Although Taylor is homesick, she continues to work hard and knows that she is getting better everyday. Taylor always asks about her friends and family, and wanted to write you all a note:
"Hi everyone! I miss you and I can't wait to come home. I hope I can see you all soon. I miss my toys and my Mommy's bed. Thank you for writing to me all the time. Love, Taylor"
Thank all of you for your love, support and prayers.
Thursday, February 1, 2007
Update February 1, 2007
Taylor is officially off of the ventilator! She is breathing with assistance from the pacer 24 hours a day. Taylor has transitioned well to the pacer and enjoys travelling around the hospital without her respiratory therapist and ventilator in tow.
Taylor continues to join in the activities on the second floor. The other day she attended a performance by the Sacramento Ballet Company. She also got a visit from a couple players on the Giants and even has her very own baseball hat.
Now that Taylor no longer relies on the ventilator to breath, there is talk of moving her from the ICU to a room on the third floor. Her new room would be less restrictive than the ICU and she would even get to attend school at Shriner's.
A dinner/dance fundraiser for Taylor is scheduled for May 5, 2007 in Woodland at the Elk's Lodge. Information on where to get tickets, time, locations, etc. will follow as the date of the event nears.
Taylor appreciates all of your e-mails, visits, and phone calls. Thanks for your continued support.
Taylor continues to join in the activities on the second floor. The other day she attended a performance by the Sacramento Ballet Company. She also got a visit from a couple players on the Giants and even has her very own baseball hat.
Now that Taylor no longer relies on the ventilator to breath, there is talk of moving her from the ICU to a room on the third floor. Her new room would be less restrictive than the ICU and she would even get to attend school at Shriner's.
A dinner/dance fundraiser for Taylor is scheduled for May 5, 2007 in Woodland at the Elk's Lodge. Information on where to get tickets, time, locations, etc. will follow as the date of the event nears.
Taylor appreciates all of your e-mails, visits, and phone calls. Thanks for your continued support.
Sunday, January 28, 2007
Update January 28, 2007
Taylor was in good spirits today. She was on her pacer for 12 hours and doing very well. The doctors hope that by the end of the week she will be breathing without her ventilator. After she transitions to the pacer full time the doctors will change out Taylor's tracheotomy and replace it with an infant tracheotomy. They will put a cap on the tracheotomy in case there is ever a need for it.
Taylor has been sitting up in her stroller a lot lately. The other day she was in her stroller from nine hours. She went down to the activities area on the second floor. The second floor is full of activities for the kids, including painting, beading, games, movies, and cooking. She made a necklace and cookies today. Taylor gets to interact with other children in the activities area.
Taylor is excited about celebrating her mom's birthday tomorrow.
Taylor has been sitting up in her stroller a lot lately. The other day she was in her stroller from nine hours. She went down to the activities area on the second floor. The second floor is full of activities for the kids, including painting, beading, games, movies, and cooking. She made a necklace and cookies today. Taylor gets to interact with other children in the activities area.
Taylor is excited about celebrating her mom's birthday tomorrow.
Wednesday, January 24, 2007
Update January 24, 2007
The doctors have started the process of weaning Taylor off of her ventilator. Her first treatment occurred on Monday. Taylor was breathing with assistance from the pacer and without the ventilator for about 20 minutes. The doctors were very pleased with the results. Taylor did not seem to notice the difference between breathing with the ventilator and breathing with the pacer. The plan is to increase the amount of time that she uses the pacer each day.
The doctors have not yet installed a talking valve on Taylor's tracheotomy, but she is talking well without it. She spoke on the phone to a couple of her friends the other day. She really enjoyed talking with her friends again.
Taylor has been able to get out of her room and stroll through the halls of Shriner's Hospital. It's really an amazing facility. They have an area for playing games and have a lot of floor to ceiling windows. Taylor has not received her own chair yet, but she continues to use a loaner. The design of the new chairs is fascinating. They only weigh 35 pounds and can be folded up like a stroller.
Taylor continues to receive electrical stimulation therapy.
The doctors have not yet installed a talking valve on Taylor's tracheotomy, but she is talking well without it. She spoke on the phone to a couple of her friends the other day. She really enjoyed talking with her friends again.
Taylor has been able to get out of her room and stroll through the halls of Shriner's Hospital. It's really an amazing facility. They have an area for playing games and have a lot of floor to ceiling windows. Taylor has not received her own chair yet, but she continues to use a loaner. The design of the new chairs is fascinating. They only weigh 35 pounds and can be folded up like a stroller.
Taylor continues to receive electrical stimulation therapy.
Wednesday, January 17, 2007
Update January 17, 2007 & Flickr Photo Account
The doctors replaced Taylor's tracheotomy with a smaller one yesterday. She is now able to talk on her own. It's great to hear her voice! The doctors have tentatively set January 22 as the day when they will begin weaning Taylor off of her ventilator.
Taylor started electrical stimulation therapy on her upper arms. The electrical stimulation causes her arm muscles to contract. Slowly she should begin to gain back some of her lost muscle tone. The goal is to perform electrical stimulation at least 20 minutes per day. They are starting the therapy on her upper arms and will begin stimulation on her legs soon.
Taylor's appetite has been increasing everyday. The doctors are happy to see her eating and hope that she will gain some weight.
Taylor now has a Flickr photo group. You can add your photo(s) to Taylor's Flickr photo group pool. We welcome photos of you, your children, your grandchildren, your pets, beautiful things you've photographed--whatever you think would make a 5-year-old girl smile. If you don't have a Flickr account (they're FREE at www.flickr.com) or don't want to set one up, you can email your photos to taylorparkerfanclub@yahoo.com and we'll post them to the Flickr pool for you.
Directions for Flickr users :Upload the photos you want to share to your Flickr account. To become a member of Taylor's group, go to "Groups" at the top of the Flickr page and in the pull-down menu, click "Search for a Group." Type Taylor Parker Fan Club in the search box to get to the link for her group and add yourself as a member. To send your photos to her group's pool, open the photo you want to send (by clicking to enlarge it)--a small set of icons will appear above the photo. Click the second icon, "Send to Group" and a pull-down menu with her group's name will appear so you can click it to send the photo. That's it! Click the flashing badge on the right sidebar of Taylor's homepage to go to Taylor Parker Fan Club on Flickr and take a look!
Taylor started electrical stimulation therapy on her upper arms. The electrical stimulation causes her arm muscles to contract. Slowly she should begin to gain back some of her lost muscle tone. The goal is to perform electrical stimulation at least 20 minutes per day. They are starting the therapy on her upper arms and will begin stimulation on her legs soon.
Taylor's appetite has been increasing everyday. The doctors are happy to see her eating and hope that she will gain some weight.
Taylor now has a Flickr photo group. You can add your photo(s) to Taylor's Flickr photo group pool. We welcome photos of you, your children, your grandchildren, your pets, beautiful things you've photographed--whatever you think would make a 5-year-old girl smile. If you don't have a Flickr account (they're FREE at www.flickr.com) or don't want to set one up, you can email your photos to taylorparkerfanclub@yahoo.com and we'll post them to the Flickr pool for you.
Directions for Flickr users :Upload the photos you want to share to your Flickr account. To become a member of Taylor's group, go to "Groups" at the top of the Flickr page and in the pull-down menu, click "Search for a Group." Type Taylor Parker Fan Club in the search box to get to the link for her group and add yourself as a member. To send your photos to her group's pool, open the photo you want to send (by clicking to enlarge it)--a small set of icons will appear above the photo. Click the second icon, "Send to Group" and a pull-down menu with her group's name will appear so you can click it to send the photo. That's it! Click the flashing badge on the right sidebar of Taylor's homepage to go to Taylor Parker Fan Club on Flickr and take a look!
Sunday, January 14, 2007
Update January 14, 2007
Taylor had a fun day today with her Mom and Aunt Melissa. Taylor had spa day; Melissa painted her fingernails and toenails. Taylor had a nice visit yesterday with her neighbors in Chico, Don and Judy. She keeps talking about her friends in Chico and how much see misses them. It means a lot to her when see hears from all of her friends. Thanks to all who continue to send messages!
The doctors have said that Taylor's wounds from the surgery are healing well. They hope to change out Taylor's tracheotomy this week to something smaller so that she can more easily talk. At the end of this week or the beginning of next week the doctors plan to begin weaning Taylor off of the ventilator. It will take a while before she is breathing without the ventilator, but we are looking forward to starting the process.
A fundraiser for Taylor will be held at Fit One Athletic Club this Saturday, January 20th from 10:00 am - 3:00 pm. There will be activities for the kids, including, dodge ball, Kids Carnival, games, and a bounce house. They will have an auction for prizes, including, WWW and Boot Camp classes, Karate lessons, GTS, PT, and Carwashes. The event is also sponsored by Jamba Juice, Great Harvest Bread, Scrubbs, East Ave Community Church and Printed Image & Costco. Additional information can be found on the side bar of the front page of this blog.
The doctors have said that Taylor's wounds from the surgery are healing well. They hope to change out Taylor's tracheotomy this week to something smaller so that she can more easily talk. At the end of this week or the beginning of next week the doctors plan to begin weaning Taylor off of the ventilator. It will take a while before she is breathing without the ventilator, but we are looking forward to starting the process.
A fundraiser for Taylor will be held at Fit One Athletic Club this Saturday, January 20th from 10:00 am - 3:00 pm. There will be activities for the kids, including, dodge ball, Kids Carnival, games, and a bounce house. They will have an auction for prizes, including, WWW and Boot Camp classes, Karate lessons, GTS, PT, and Carwashes. The event is also sponsored by Jamba Juice, Great Harvest Bread, Scrubbs, East Ave Community Church and Printed Image & Costco. Additional information can be found on the side bar of the front page of this blog.
Tuesday, January 9, 2007
Update January 9, 2007
Taylor underwent surgery yesterday to install a phrenic pacer. Taylor's diaphragm is in good condition. During surgery the doctors made sure the pacer was functioning properly and tested it to make sure that Taylor's diaphragm was working with assistance from the pacer. It turns out that during the test, the pacer only needed to be set at a rating of 0.9 out of 10 in order to assist Taylor's diaphragm in function properly. The doctors were very pleased with the outcome of the surgery.
Taylor will have about 10 days to recover before the pacer is turned on and the doctor's begin weaning her of the ventilator. After that the doctor's predict that it will take about two weeks to completely wean her off of the ventilator and have her breathing with assistance from the pacer. After Taylor is breathing with assistance from the ventilator, a couple of changes will have to be made to Taylor's tracheotomy in order for her to be able to talk.
Taylor woke up from the surgery in a good mood. She continues to be very brave and a great patient. We want to thank everyone for their continued support. Taylor always enjoys reading your e-mails and well wishes.
Taylor will have about 10 days to recover before the pacer is turned on and the doctor's begin weaning her of the ventilator. After that the doctor's predict that it will take about two weeks to completely wean her off of the ventilator and have her breathing with assistance from the pacer. After Taylor is breathing with assistance from the ventilator, a couple of changes will have to be made to Taylor's tracheotomy in order for her to be able to talk.
Taylor woke up from the surgery in a good mood. She continues to be very brave and a great patient. We want to thank everyone for their continued support. Taylor always enjoys reading your e-mails and well wishes.
Friday, January 5, 2007
Update January 5, 2007
Taylor moved across the street today to Shriner's Hospital. Her new room is very large with big windows. Taylor watched the Med Center helicopter land twice today. An entire wall in her room is painted pink, Taylor's favorite color. The nurses are very nice and even gave Taylor a device to call them. The device attaches to her bed and when she blows into it the nurse comes to her room. Taylor is getting used to the surroundings and the new people, but we are sure she is going to enjoy her new room.
Unfortunately Taylor is not allowed to have guests under 15 years old in her new room, however, she will be able to meet guests in a community play area where there is sure to be lots of entertainment. Taylor will be arriving in style in a sporty new chair. The one that she is using now is a loaner, but Taylor will most likely be getting her own soon. She will be able to pick the color and can have the chair embroidered with her name.
Currently Taylor is scheduled to have surgery on Monday to install the phrenic pacer. This will allow her to breath on her own without use of the ventilator. Following the surgery, it will take about a month to ween her off the ventilator.
It was decided that Taylor will go through rehab at Shriner's. The Shriner's in Philadelphia will be lending a special rehab bike to Taylor for use during her stay. The bike will be used to get Taylor's legs moving again. Her rehab program will also include electrical stimulation in order to get her muscles to contract. The goal is to build back some lost muscle tone.
Unfortunately Taylor is not allowed to have guests under 15 years old in her new room, however, she will be able to meet guests in a community play area where there is sure to be lots of entertainment. Taylor will be arriving in style in a sporty new chair. The one that she is using now is a loaner, but Taylor will most likely be getting her own soon. She will be able to pick the color and can have the chair embroidered with her name.
Currently Taylor is scheduled to have surgery on Monday to install the phrenic pacer. This will allow her to breath on her own without use of the ventilator. Following the surgery, it will take about a month to ween her off the ventilator.
It was decided that Taylor will go through rehab at Shriner's. The Shriner's in Philadelphia will be lending a special rehab bike to Taylor for use during her stay. The bike will be used to get Taylor's legs moving again. Her rehab program will also include electrical stimulation in order to get her muscles to contract. The goal is to build back some lost muscle tone.
Tuesday, January 2, 2007
Update January 2, 2007
Happy New Year!
There have been recent signs in the increase of Taylor's mobility, including significant shoulder movement and siting forward a bit in her chair. She has been siting up in her chair a lot and enjoys taking tours around the hospital and outside. She looked very fashionable the other day as she went outside wearing Tammy's sunglasses. In the past couple days Taylor has also been taking some breaths on her own.
A friend of Tammy's, Vanessa Voyles, put Tammy in touch with Christopher Reeve's doctor, Dr. John McDonald (Thanks Vanessa!!). Dr. McDonald is a specialist in the field of spinal cord injuries with a focus on pediatric paralysis. After hearing Taylor's story and her recovery thus far, Dr. McDonald is optimistic for Taylor's further recovery. Dr. McDonald runs the spinal cord rehabilitation and research program at the Kennedy Krieger Institute in Baltimore, MD. The family is trying to have Taylor transferred to Baltimore in order to receive "activity-based restoration" (ABR) therapy. This type of therapy is designed to help patients with long-term spinal cord injuries recover sensation, movement and independence.
As the family works to get Taylor transferred to Baltimore, Taylor will remain at the UC Davis Med Center. Her transfer to Shriner's and the surgery to install the phrenic pacer have been put on hold. We will keep you informed as plans are finalized.
We hope that everyone had a fun New Years Eve and wish you all a great 2007. Taylor spent the New Year watching fireworks through her window. What a great surprise! Taylor also enjoyed visiting with her friends Olivia and Avery this past weekend.
There have been recent signs in the increase of Taylor's mobility, including significant shoulder movement and siting forward a bit in her chair. She has been siting up in her chair a lot and enjoys taking tours around the hospital and outside. She looked very fashionable the other day as she went outside wearing Tammy's sunglasses. In the past couple days Taylor has also been taking some breaths on her own.
A friend of Tammy's, Vanessa Voyles, put Tammy in touch with Christopher Reeve's doctor, Dr. John McDonald (Thanks Vanessa!!). Dr. McDonald is a specialist in the field of spinal cord injuries with a focus on pediatric paralysis. After hearing Taylor's story and her recovery thus far, Dr. McDonald is optimistic for Taylor's further recovery. Dr. McDonald runs the spinal cord rehabilitation and research program at the Kennedy Krieger Institute in Baltimore, MD. The family is trying to have Taylor transferred to Baltimore in order to receive "activity-based restoration" (ABR) therapy. This type of therapy is designed to help patients with long-term spinal cord injuries recover sensation, movement and independence.
As the family works to get Taylor transferred to Baltimore, Taylor will remain at the UC Davis Med Center. Her transfer to Shriner's and the surgery to install the phrenic pacer have been put on hold. We will keep you informed as plans are finalized.
We hope that everyone had a fun New Years Eve and wish you all a great 2007. Taylor spent the New Year watching fireworks through her window. What a great surprise! Taylor also enjoyed visiting with her friends Olivia and Avery this past weekend.
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