Make sure you start at the beginning of our journey at mayo so you do not get confused!! Scroll all the way to the bottom to see what we learned and how they helped payton get her life back! God knew where to send us! So thankful!
Graduation!!! I know what you may be thinking, and I have to say, I thought it to- graduation, really??
After participating in the program, yes these kids deserve a graduation!! They work hard from 8 am until 5 pm to learn how to live with pain and function!! Thankfully Payton will be able to retrain her brain to keep the nerve endings from "firing" off at the wrong time, but some of the students will deal with lifelong pain.
We leave today knowing that Payton has the skills to work through any pain that comes her way! It will be hard, but we pray that her faith will remain strong and God will provide the strength she needs to overcome!
She will be returning to school full time on Monday and she is excited to get back to church this weekend! Please remember when you see her that she is no longer talking about her pain. Talking about it sends signals to the "bad" sensors and causes pain. So, if Payton says "I love you too!" When you ask or if she changes the subject, please know she isn't being rude. She knows that you care about her and she is grateful for your love and support. She is just following the doctors orders!
So with this- we say, look out world, here comes Payton!!! She is ready to enjoy life using her PRC tools!!!
Today was a great day! We had meeting with several of Payton's therapist. In physical therapy, she has increased her aerobic ability x 3 since arriving, she has double most of the weights she has been lifting and is excited to continue this at home. In occupational therapy, she ha learned all about moderation and how to plan her days! She completed a two week schedule for our departure to include our drive home, her social activities and school. Then her last appointment today was with biofeedback. They remeasured her stress and ability to breathe through stressful situations. Relaxation is key!
It is amazing to me how quickly she has changed and how quickly her brain is accepting the new sensors she is creating. Truly amazing how God developed our brains and what plans He has for Payton and the rest of the kids at PRC.
It is becoming bitter sweet- time to go home to all of our family and friends but we are also leaving our new friends who feel like family after only a few weeks.
This program has given us more than we could have ever imagined. It has given Payton her life back, but also our family a new life! Yes, we are still going to have difficult days until Payton has been able to eliminate all the sensors in the brain that are creating her pain, but now we have the tools!
Brr it's cold outside! Typically we would my want to be anywhere that is this cold, but the Mayo clinic and the PRC program are exactly where we need to be.
Payton will graduate on Tuesday and she is ready! She knows all of her techniques and she is confident that she will be able to put them in motion.
Many of her friends from the program graduated this week and they have already started back to school. They have been sharing their success stories, which is very helpful.
We are ready to share Payton's success story with you- just 2 more program days!!
It is hard to believe that we have only be here for 13 program days. We have learned so much- and feel so much stronger!
Payton is no longer focusing on her pain, her past. She is focusing on the future and all the wonderful things God will put before her.
Just this morning, she woke up and had a migraine so she told me that she would be doing some relaxation! If we weren't in a hotel room, I believe she would have done this without announcing it (like she has been taught), but due to the limited space and mom talking to her- she was politely requesting that I stop talking and allow her to use her tools!! Wow- what a difference a month makes!!
So many of you might remember that we were on edge, ready to get to Mayo. We prayed that an opening would come up and we would get to come early- but God made us wait. After meeting these two ladies, Deb and Kayla, I understand why!
This past year, I feel like my faith has grown even in the midst of all our family has been through but I was still trying to pray harder so He would give me what I wanted when I wanted it.
Deb and Kayla were a blessing- providing answers, giving me strength to talk openly about my relationship with Christ and being the comfort of God's love.
Kayla graduated today and we are so proud of how much she and Deb have grown and healed while they were here. We will miss them dearly and we pray that God will send them to Texas to visit with us soon!
I know it may seem like I side tracked from our program today- but that is not so. Part of this program is meeting other people who have experienced the same/similar thing. The kids validate each other, the parents treasure each other's understanding without saying a word and God builds a bond that we need to last a lifetime!
Raise your hand if you want to go rock climbing!! Yes, that's right, we spent another night at the climbing gym! It is wonderful seeing Payton in the gym again! She does not want to climb competitively again, but she is enjoying being on the wall and hanging out with friends!
The rest of the day was filled with discussions of perfectionism and going home. Most kids here are kids who have been in advanced placement classes and suffer from trying to be perfect. We learned today that there are 2 types of perfectionist- one who will go to any lengths to do something right and one who will avoid doing something because they are afraid they will not be able to do it perfectly.
With Payton's pain and physical limitations, she stopped doing some things- could it be that she stopped trying to do them because she was afraid she was going to fell at something that she use to be able to do "perfectly"?
First, sorry for the confusion with the blogs! I have emailed weebly to try to figure out how to get them back in the correct order.
Now for the good stuff! Yesterday was a day of graduations and learning what is expected of us when we come home.
Our old question: how can someone else fix what is wrong?
Our new question: what do I need to do to function?
Watch this cute video on youtube and see how it works!
Bad day? Clean it up with Kylee Swendsrud
The start of a new week, exciting but it also means more graduations!! The next 3, friends will be graduating and starting their new lives as pain free teens. I don't know who is more upset- Payton or me! We have met so many wonderful people here!
I believe that this is a large part of the program- connecting families who understand what each other has been through. All of us end up here for different reasons- an infection, an injury, a long list of surgeries!!! But they all trigger something in the brain to cause central sensitization. And yes, the goal is to leave here with enough tools to fill a "bad day box" but also with the phone numbers of others who can help us through our bad days!! No more running to the doctor to endure more tests and finger pokes! We will go through our tools and rely on our PRC family to keep us laughing and smiling!!
Well, our family fun had to end. Chad and Sam had to head back to Texas. Crazy as it sounds, we only have a little over a week to go, but it was difficult watching them walk into the airport.
But don't worry, we didn't have long to think about it! Our schedule was full- first stop, breakfast at Perkins. Then off to the mall of America with many of the kids from Mayo.
Wow! That explains this mall! It is enormous!! Payton and her friends walked all over the place and then so desperately wanted to nap on the hour plus drive back to the hotel but napping is a no no! So they turned up the music and rolled down the windows (briefly) to wake themselves up. Napping is frowned upon because it can mess up your nighttime sleep schedule!
Also frowned upon are "pain behaviors." Since the brain has created too many pain sensors, the more you talk about your pain or show your pain, you are validating the brains actions and it will continue to send sensors. So, the kids use their faked bravery skills to avoid showing pain. But Payton made a good point today- anyone might have pain in their feet tonight after walking the mall so she isn't too concerned that her feet are hurting! It's acute pain, not chronic!!
Please pray that it was just the excessive walking in the 2nd largest mall in the U.S. and not her nerves! And also pray that her feelings of being home sick will go away- she misses her friends so much!!
Following a schedule on the weekend is different for us! Having a game here or there use to seem like a challenge, but now, keeping ourselves busy from sun up to sun down to going to be a real challenge!!
Being active is a must so the program recommends getting 2 hours of activity per day on the weekend! Honey and Penelope (our dogs) will love this!! I am sure they will claim 1 hour of each day for a walk!!
This weekend, we filled our Saturday with rock climbing. Though I do not believe Payton will decide to compete again, at least she is enjoying being back in the gym! And Chad, Sam and I didn't mind it either!!
Friday was a great day! Sams spent the entire day with Payton. She was able to spend bits and pieces of Tuesday, Wednesday, and Thursday with her, but today she stayed from 8 am- 8 pm with Payton. They were both tired, but that didn't stop them from going out to bowl, play laser tag and videos games with the rest of the group!
It was great for Sam to meet the other kids and hear they feelings and experience with pain. The classes she attended helped her understand that even though at times it seemed that Payton's pain came on right when it was time to do chores- she wasn't faking it! But also, even though Payton is experiencing pain- she still had to do the chores and work through it. We can not be "pillow fluffers" anymore and help her with her chores!
None of us will be slacking off any more!! Let boot camp begin!!!
Faked bravery and a box from home- what do they have in common?? Not sure, but let's see if we can make a connection!
Payton came to this program with something that many of the other participants didn't have- FRIENDS!! They have proven their loyalty to her time and time again- spending time with her when she was feeling great and when she didn't feel so great! She never had to hide her true feelings with them and they still care for her- homemade pictures, makeup and candy prove that!!
Something they have not required of her, but we have seen her do from time to time is what the program refers to as "faked bravery." Faked bravery is when a child or truly anyone puts in a happy face when they are not feeling well and they continue to function with their daily lives. You do not talk about any pain you are having and you go and have fun!
Amazingly enough, they have found that this helps the brain. If you ignore the pain sensors that it is sending, it will stop sending those sensors. This is why Payton's "friend therapy" when she was in the wheelchair helped her to get out of the chair and start walking again! She was able to push those sensors back and eliminate just enough so she could walk in her toes and then slowly put weight on her entire foot.
Now with the tools she is learning, she is able to use faked bravery, breathing, self talk, visualization to re program her brain and stop these pain sensors from firing to the various parts of her body. If it was only one sensor, we might be able to head back to Texas tomorrow, but unfortunately every time you think of the pain, these sensors mutiple so we have to keep working and learn how to make these tools second nature!
Please keep praying! And thank you to our friends who support us- with a box from home, a text, a prayer. We need you all!!
Hi! Sorry I didn't post this last night, but after our outing, we went out to dinner to celebrate!!
First, let me start with our day in class. Not to be a downer, but did you know that 20% of teens experience depression?? That's 1 out of 5 of our kids! And with nerve amplification, it seems to be a given- who knew pain would cause depression!?! And how many of us actually knew that depression is a brain disorder?? We watched an amazing video of a young man who hid his depression from everyone- but thankfully before he took his life, he recognized it and he has become a speaker sharing his story so hopefully depression will lose its stigma and more lives will be saved! http://www.ted.com/talks/kevin_breel_confessions
After this "depressing" news, we finished our day with an outing to a rock climbing gym. It wasn't Payton's choice, but wow did she come back to life in this setting!! She had so much fun climbing but truly she had the most fun motivating the others to climb! One of the parents said that Payton is training to be a motivational speaker!
It is difficult to believe that Payton was in a wheelchair a month ago, having difficulty putting weight on her heels and feet!!
This program is amazing! We are so thankful that God led us here!!
Yay!! Reinforcements have arrived!! Chad and Sam are here to learn the tricks of the trade- living healthy pain free life!! They arrived late in the day, but Payton and I filled them in on our new tool and you want to hear this: family game night does not have to be an entire night!
What teenager wants to spend the entire evening their parents? I know, I was shocked too!! Payton thinks the idea is great. A family fun time of 15-20 minutes. This gives all of us time to connect but no feel stuck.
Breathe deep and play playdoh charades with your parents!!
"An 8 lane super highway!" Today one of the nurses put nerve amplification/central sensitization syndrome into perspective for us. He said that the brain path for our nerves is typically "a two lane dirt road" but with nerve amplification its like "an eight lane super highway". I thought that was a wonderful way to look at this. Kids with a brain that is constantly sending signals of pain are in overdrive!
This is why the program approaches dealing with the pain like the navy seals do- with 4 easy steps! Isn't that what every navy seal says about their training- it's four easy steps!?!
1- goal setting: living a life with pain or as pain free as possible/completing a mission without injury
2- mental rehearsal: visualize going to school and sitting through class without pain/visualize rescuing a hostage
3- self talk: remember the little engine that could? Whether you are a navy seal or a child in pain, all you have to do is say "I think I can, I think I can!"
4- control: deep breathing when your brain starts to send pain signals- again same technique for both
Great techniques, but we just have to remember to put them into action and at this point, Payton's brain isn't sure it's on board. She is trying to put all these new skills into action and then doing them in moderation. Instead of planning a life without pain, plan for an hour without pain.
She has accomplished an hour- now we need to work on longer periods of time! She will be ready for seal training before you know it!
Sunday- snow, skates and sixteen degrees! Today we went ice skating with the group from PRC. Payton was a trooper. The program teaches you that talking/complaining about your pain is a no no. Verbalizing it gives the brain more power to increase the pain so if you keep it to yourself, it helps in retraining your brain and the signals it sends to your nerves.
She hasn't said anything about her feet or back hurting, but she is moving slower than normal. She has been doing a lot in physical therapy so getting out of the bed has been somewhat of a challenge, but she is getting her fight back and she wants to be "normal" again!
I am doing a lot of breathing! I am teaching everyone how to do the deep breathing exercises! You feel so relax and rejuvenated after!!
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!!
Hi everyone! Thank you so much for visiting our site! We would love to know who has been here and if you have any questions or thoughts about our fundraising, Payton's experience being a heart patient, Samantha's experience as a sister of a heart patient or anything else! It is difficult knowing what to say or do when kids are "sick," so we pray that God's purpose for Payton having her medical challenges will allow us to help others! We are now "experts" as parents with a child who has had 7 surgeries, "experts" as a child going through the unknowns of the medical world, and "experts" as a sibling supporting a sister during hospital stays, illness and recovery! So, let us know how we can help you!!