A schedule for the weekend!?! What's up with that!! The program believes that the kids need to follow a schedule for the first 6 months after their pain goes away. Retraining Payton's brian is going to help all of us get our lives in order!!
Yes, that is what we are learning here. Payton's nerve amplification/central sensitization syndrome has caused her brain to send signals to her nerves telling them they are in pain even when they are not. And the nerves in her back and feet were constantly in pain.
Already in 3 days, Payton has learned how to control the pain and we are going from 8 am until 8 pm- without much pain!! Please pray that she is able to control it forever!! They have told us it is like a roller coaster for most kids. They are on a high when they start, experience a fall and then level out so when they leave, they have the tools.
We are going to relax, deep breathe and go to bed so we can follow our schedule tomorrow!
If you are a teacher, please do not read this!! I fell asleep in class today! Yes, that's right, I wasn't quite snoring like one of the dad's, but I forgot where I was.
Diaphragmatic breathing or deep breathing is a big part of this program and you better believe it is going to be a big part of our lives! I was so relaxed and after 10 minutes, I was rejuvenated!
The best part is, Payton enjoys doing it!! It can help anyone when they become stressed, but the way it provides oxygen to your blood and your body is amazing! We really should teaching breathing in our preschool classes to kick start a life of healthy breathing!
But don't worry, if you would like for us to teach you, we will have it perfected by the time we get home. The doctors here recommend doing it at least 3 times a day for 10 minutes at a time and you better believe it, we WILL be breathing!!!
Another good day! Payton went to PRC (pain rehab clinic) with a smile on her face! And shortly after we arrived, one of the dad's told me that his daughter was smiling because she had a friend in Payton! It's amazing- I thought his daughter was helping mine!!
We did many things today, but my favorite was watching a video with a gentleman with no arms or legs. I tried to download the link but I couldn't figure it out tonight so I am copying the YouTube topic so hopefully you can find it. Every person in the world should have to watch this!!
Nick Vujicic BEST LIFE CHANGING INSPIRATIONAL VIDEO OF ALL TIME! 2013
He is an amazing Christian man!
Hi! lots of wonderful memories from today. Two young ladies graduated the program today and we now understand why they have new kids start the program each day. Us newbies look like deer in the headlights, praying that this will all come together and then you attend a graduation and group with other parents and you know that God has sent you to the right place! Payton is smiling and is already working hard. After a long day in physical therapy, occupational therapy, family group, relaxation, and teen group- she was excited to go to dinner with a new friend. Of course, now we can barely keep our heads up as she reads and I try to make sense while I type! Tomorrow is a new day- Chad is heading back home to be with Samantha, and Payton and I will have all of her therapies and more meetings with doctors. So as you might imagine, we are off to bed! More tomorrow- oh, and how could I forget, keep the encouraging words coming! They made all of us smile!!
Hi everyone! It's Keely- Payton and Samantha's mom. The girls have given me permission to blog while we are at the Mayo clinic. Yes we are freezing the pain away in Rochester, Minnesota! Well, we are literally freezing, but getting the pain to go away isn't that easy!
As most of you know, Payton will be officially starting her 15 day program with 15 other kids from ages 14-22 tomorrow. Yesterday and today, we spent time with numerous nurses, doctors and therapists telling them Payton's story but this afternoon was amazing! Payton and 7 other kids shared their stories with each other and all of us parents. After hearing the 7 stories, we realized that their pain, their medical journey to get a diagnosis and their struggles were very similar. There is only one area that is different- friendships! Most of the other kids have lost all of their friends, because their friends do not understand how you can be in pain one day and not the next or for days at a time without a true injury. But God placed many people in Payton's life so she did not have to experience this total loss. "Friend therapy" helped to motivate Payton to get up and walk and do things that we could not motivate her to do- and we are thankful that she has such wonderful friends!
God has opened a new door for us to learn from these families, kids and staff at Mayo and we can't wait to share our journey with you!
We will update you daily- so be ready, our journey to recovery is beginning!!