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.
Sunday, January 28, 2007
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.
Subscribe to:
Posts (Atom)
