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.
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14 comments:
Wow!! So many changes to get used to, but it all sounds exciting and positive!! Taylor, I can't wait to see you again and check out your room. It must be really cool to watch the helicopter take off and land. Keep smiling sweetie and we will blow extra hard to get our hugs n' kisses to your new room!!
-XOXOXO "Miss Stacy"
Hi Taylor,
I am so proud of you! I continue to pray for you and your family. Please khow that so many of us are continuing to send you loving prayers. That is so cool that you can have your name embroidered on the chair. I am curious to hear about the activities that you will be able to participate in. Keep up the good work. Love and blessings,
Linda Knapp
Hi Taylor,
I hope you like Shriners. Sounds like you are doing well, I sure hope so. It seems like you have alot of people that care about you so much. I know that everyone is praying for you and hoping for your recovery. You must be a pretty amazing little girl to be going through this and you can still keep a smile on your face. Be strong Taylor and remember (( NEVER, NEVER GIVE UP )). It is very important that you and your family keep having faith through this. I know that the angels are watching over you always.
I still look forward to the day that I can meet you. You inspire me by just being so strong and brave.
Have to say good bye for now.
Have sweet dreams tonight.
Always,
Judy B. (Travis's grandma)
Taylor- You are one amazing little girl!!!! I bet you like your new room at Shriners, and being able to see the helicopters is so cool! We think about you all the time and are so excited to hear how much progress you have made. Keep it up girl!
Love,
Summer Christman
Hi Taylor,
Sounds like you have a nice view in your new room! We're thinking of you today, as we do everyday, and are hoping your surgery went well. Keep up the good work.
Lots of Love,
The Van Brocklin Family
Taylor,
Everyone in class hopes you like your new room at the Shriner's Hospital. I have many things for you. Are you practicing your letters and listening to the tapes? Is your homework done? The bike sounds great! We'll have to make some new room decorations for your new PINK room. I'll try to get down soon. We have lots to do! We LOVE you! Be strong. Lots of love from Mrs Knecht and Everyone in Room 28.
Happy new Year Taylor and Family. Glad you are adapting to your move and your room sounds so cool. Pink is a great color. You are in our thoughts and prayers everyday and Bailey is still working on her gift to send you. WOW, she is slow sometimes! Anyhow sweet cheeks, keep up the great progress and we look forward to your updates always.
Love, The Floyd Family
Hi Taylor,
I hope your surgery went well. I love you very much.
Love,
Olivia
Hi Taylor,
I hope your surgery went well. I love you very much.
Love,
Olivia
Hi Taylor,
All of your fans are hoping your surgery went well yesterday. You don't know me, but I work at UCD and have been following your story through this blog. I hope everything went well and you will be more comfortable with your pacer.
Enjoy your pink room at Shriners!
Barbara
Hi Taylor,
You probably don't know me. My name is Bryce Perry. I live in Maxwell. I am 10 years old. I like to ride horses just like you do. My horse is named Baron. I ride at the Maxwell Rodeo and help my Dad with our cows. I am in 4-H and show beef. I know your Grandpa Doug Parker and you Uncle Cody. Your grandpa bought my steer at the fair last year. I just wanted to let you know we are all thinking about you and praying for you to get better. Get well.
You are very brave.
from,
Bryce
Hi Taylor,
My name is Taylor Perry. I live in Maxwell. I am eight years old. I go to school at Maxwell Elementary. I am in 3rd grade. I am in 4-H. I show a pygmy goat. I ride horses like you do. My horse is named Buck. I have a dog named Buddy and a cat named Patches. I love animals. I hope you get better and get to go home soon. We pray for you every night.
Your Friend,
Taylor Perry
Dear Taylor! I was surprised to come to work and find your bed empty....my little new best friend had left! I'm glad to hear that you have a beatiful new room with a pink wall!! Keep up the hard work girl....it will be worthed in the end! Say hi to mom and dad for me....keep them out of trouble!Lots of love, Marianka (night RN, UCDMC)
Hello Taylor,
I am so happy to hear about all the changes and plans. You are such a fighter! Keep praying and believing. I think about you and your Mom everyday and send my love, prayers and blessings. Please remember that you are remembered! You are important to us and even more so to God! Have your Mom read you Romans 8:28 from the bible. You will all be blessed and encouraged by it.
Love,
Linda Knapp
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