A Chapter Closed

     As most of us already know, Easter celebrates the day Jesus came back to life, or was raised from the dead, three days after his death on the cross. I essence, symbolizing a new beginning. Today, this family looked at this day as a new beginning for our son Peyton, giving this day even more meaning.

    To catch everyone up, Chapter One started on Sept 8th 2008 when we returned to the United States after being stationed in Italy for two years, this was they day we first heard about Twin-to-Twin Transfusion Syndrome. Chapter one consisted of a trip to Cincinnati Children's Hospital, that was scheduled for a week but turned into 34 days in a one bed hotel room with myself, my pregnant wife our then four year old daughter and a cat...poor Presley; an MRI, x-ray, two surgeries, an infinite amount of ultrasounds, WAY too many rounds of magnesium to stop contractions, and a ton of hope.  The chapter concluded in February of 2009 when we finally brought Aiden and Peyton home from the hospital. This family spent 90 consecutive days and Memorial Hospital in Colorado Springs: 21 days spent with mommy while she was on bed rest, and 79 with the boys until they were released from the NICU. Boy we were happy when that ended, time to get on with our normal life...

     Chapter Two began at dinner a few months after the boys came home. Aiden and Peyton's neonatologist, turned family friend, asked me if we had ever had an fMRI of Peyton's brain, or has anyone ever said anything about his spasticity. In the eyes of parents, there was absolutely nothing wrong with Peyton, after all he had suffered enough, it was time for him to live a normal life chasing bugs and falling off of his bicycle, but to a trained professional something wasn't completely right. As time progressed, even we began to see he wasn't like his brother. He began physical and occupational therapy to try to help him get over this hump, but we weren't seeing any change ~ so we pushed to have that fMRI. When we got the results from his doctor, by the grace of God, he was completely fine...unfortunately, that misdiagnoses was overturned about six months later, that is where the true battle began. Chapter Two ended just this past Friday the 6th of April as we drove back into town after two weeks, and one VERY successful surgery, in St Louis. It truly is amazing what transpired over those two weeks, even though the 6 days he was in the hospital were some of the toughest times Melissa and I have had as parents, even as veteran as we are with hospital stays...we still managed to turn this into an amazing family vacation... We saw the St Louis Zoo, the Gateway Arch, toured the St Louis Cardinal's Stadium (Peyton is a HUGE sports fan) and we managed to eat our way across the midwest, with some fine BBQ and Southern Food. 

   Chapter Three... the one we have been waiting for, starts Tuesday the 10th of April. On Tuesday Peyton sees his physical therapist for the first time as he begins his year long, 5 day a week, therapy run. This is wear it all happens, 5 day a week therapy coupled with 2hrs of stretching per day at home will be what makes or breaks it for him. So as much as we would like to say this story is over...it truly has just begun!!! BRING ON CHAPTER THREE!!!!

Thank you all so very much for the prayers for this family over the past few weeks, they truly helped us through this extremely difficult time. Please keep Peyton in mind as he continues his journey.  

      

Jennifer Horbelt of KOAA news is going to continue to follow Peyton's progress, when she does, we will make sure you all get a chance to see her excellent work. In the mean time, below is the link to the two previous stories she has done for him if you haven't had a chance to see them...or if you are like me and you just want to watch them again...and again... and again....

First Story

First Follow Up

     

St Louis Day 7/Post Op Day 5

     What an amazing last few days we have had here. Peyton was discharged from the hospital on Sunday the 1st of April, rejoining his brother, sister and grandpa at the hotel. A great day for the entire family, especially grandpa who's birthday was Sunday... A great birthday present for grandpa who has been such an amazing help since we got here. Thanks grandpa!!!
     We are so happy that Peyton is back with us, but we are even more happy with his progress over the past few days. For those of you following on Facebook, you may have gotten to see the attached videos of him standing with straight legs and flat feet and riding a bicycle for the first time in his life. Needless to say, that was a very emotional day for all of us...it was the culmination of years worth of hard work and determination from Peyton and his mom and dad. We are so proud of him!

    As happy as we are, we understand we has a LONG way to go both in the physical and pain department. The last three nights have been pretty difficult for the little guy, as has been dealing with severe muscle spasms, Friday night being the worst with him having full body spasms that lasted almost four hours. Saturday and Sunday nights were a little better, but he still woke up in a lot of pain and discomfort. We are praying this passes fast so he can get some good rest.

     We plan on spending a few more days here in St Louis while Peyton heals, he was very uncomfortable when we put him in his carseat leaving the hospital so we were forced to hold him on the drive. Hopefully his back will get better in the next few days so we can head back to Colorado.

As usual, thank you for read and spreading the word. We will continue to keep you posted. Thanks everyone!!!!

Bike Ride: http://www.youtube.com/watch?v=wBhd9uJkBf4

Stand Up:  http://www.youtube.com/watch?v=3wuBrPBbyQc

St Louis Day Four/Post Op Day Two

Hello everyone, sorry we haven't posted in a while but things have been rather busy here...

     If you have been following Facebook over the past few days you would have heard that Peyton made it through his rhizotomy surgery very well. Dr Park is confident he got all of the spasticity, needless to say we couldn't be more excited.

     The surgery itself took almost three hours, with set up and a bit of recovery time, Melissa and I didn't see Peyton for about four hours....four VERY long hours... He was very sleepy when we saw him, but very happy to see us. The effects of the procedure were immediate, I gently moved his foot and it moved a lot farther than it ever has. An hour or so later when he was getting settled in his recovery room, his nurses were checking him out and asked him to wiggle his toes and move his feet, and he did, the most we have every seen him move them before, in directions we have never seen him move, we were elated!!!!

     The past few days have had some ups and downs, he has an epidural which is great because he feels virtually no pain, but bad in a way as he feels no pain so he doesn't understand why he needs to lay still. Yesterday he began to have spasms in his back and legs that really cause some discomfort, but the nurses have begun giving him muscle relaxers to help soothe them.

     Most of yesterday and already today, he has gotten very frustrated and has taken it out on nurses, and mom and dad. If he can make it through today, tomorrow (Friday the 30th) will be a interesting day as they will remove the epidural, and begin sitting him up eventually getting him out of bed and starting some mild therapy. Needless to say, it could make for an interesting day...

     As most of you know, we are a family that believes in God, but weren't overly religious people. But through this endeavor, we have really begun to believe more, and understand there is Hope for Peyton... Yesterday I think God sent me a message that, even though this has been a very difficult journey for us, we have handled it well and has reminded us that things could be significantly worse...We had to share a room with another child the first night we were there. We were upset of course as you want as quiet of a room as possible so all of your attention can be on your child, but the child that came in was Peyton's age and had a VERY difficult night from the shunt that was put in his brain to release the pressure that his cancer is causing him...Humbling indeed.  Strangely enough, he was in our room for only one night, just long enough for us to understand.

     Before I wrap this up, I want to thank ALL of you for ALL of the prayers, and warm messages you have sent us over the last few days. We feel so blessed to have such warm friends and family surrounding us and helping this family through this very difficult time, you have really helped make things a little easier to handle. Thank you SO very much!

Thanks again for following everyone, we will continue to update you all as much as we can over the next few days as Peyton starts writing the next chapter of his new life.

Love to all!

St Louis Day One

     After two long days in the car, we made it safe and sound to St Louis. I have to say we are very proud of the kids for traveling so well, they behaved incredibly, our fingers are crossed we get so lucky on the way back.

     Today we made a trip to the St Louis Zoo, it was magnificent but more importantly, it was FREE! I can't believe such a huge zoo would be free, but it was and it was beautiful. To make it even more special we met up with Cerianne, Richard, Hari and Olivia from the UK. We have been talking to them quite a bit over the last few months, Hari is two weeks spost-op and is doing amazing, standing flat footed and even taking a few steps. It was so reassuring to see.

     Tomorrow we begin the first phase in the process with a pre-op visit to the Children's Hospital at 0930 where we will have some physical therapy evaluations and meet Dr Park in preparation for Tuesday morning. Our fingers are crossed that all goes well and that there will be nothing to stand in the way. We will let you all know tomorrow...

Our bags are packed & we are ready

Boy what a week. Running around making sure we have all our goodies, toys to keep kiddos occupied and paperwork in order. Reservations check, hospital call check and vehicle oil change check! I told you it was a busy week.

Peyton is doing great but still the same. Because he hasn't been able to get Phenol block treatments he is just not able to walk strong in his walker for a long time. This surgery is really coming at a great time.

I have had to stay so busy this week, especially today because if I stop, I start to get watery eyed and emotions really start to take over. I am so beyond ready for this surgery but I am so scared!! We as parents want nothing but the best for our children. However, I would rather be the one gearing up for surgery, not trying to be strong while he goes. I am not looking forward to him being gone for 3-5 hours on Tuesday.

Our surgery time is set for 5:45am show time with 7:30am surgery. We drive out in about 6 hours. Keep everyone updated soon.

"My legs don't work"

     Another emotional day today. We made one last trip to see our friends at Mountain Springs Church today before we head out to St Louis on Friday. It was just as emotional as every other Sunday at church has been lately, but today was made a little more difficult when Peyton said something to me that he has never said before.

     After service was over we were hanging out in the book section as Melissa was looking through some things. I was holding Peyton as I often do, and he and I were watching Valerie and Aiden run around, laughing and joking, it was a beautiful sight. And then Peyton said to me, "I want to get down and run, but I can't", I asked him "Why can't you buddy?" and he said to me..."Because my legs don't work." My heart immediately broke, I became weak like the air was sucked out of my lungs and I started to tear up, so I promised him that we were going to fix that next week. We were going to go see a doctor that can help fix his legs.

    At that point I saw Pastor Jerry, who had led todays message, walk towards me so I flagged him down to talk to him in hopes of trying to calm myself down. I mentioned how we had posted a prayer request on the church website about Peyton and he told me he knew all about it. He asked how we were doing and I told him we were getting nervous as we were rapidly approaching the 27th. At that point one of the most amazing things happened. He told me he wanted to say a prayer for Peyton but told me to hold on. He left and then came back with a mass of other pastors and members from the church. They then engulfed our family in a big circle, each of them placing their hands on Peyton, Melissa and I. And for the next several minutes each of them said their own prayer for Peyton and our family, I was so overwhelmed I was shaking.

     For most of you who know me (Todd), I have never been much of a religious person, but I felt it today! The overwhelming love and support for my son, and the genuine concern for our family from complete strangers was...Incredible!

     Mountain Springs Church has two "prayer walls" that you can write your prayers on and once your prayer has been answered you go back to that wall and you circle your prayer so everyone can see it has been answered. Needless to say Melissa, Valerie and I have written on those walls, and we cannot wait to go back there in a month and circle those prayers...I promise you, you will be able to see those circles from every spot in that church because they are going to be HUGE!!!!!

Welcome to...Holland?

A very good friend of mine forwarded this video to me today, and I think it does a wonderful job of expressing what a parent of a child with a disability goes through, and I thought I should share it with all of you...

Donate Button is Fixed

Hello everyone,

   It was brought to my attention that our Donate button wasn't working properly (thanks to my cousin Mark for letting me know). I have removed and reloaded, as well as checked it a few times and it appears to be working now.

   Once again, our insurance is only covering Peyton and Daddy to go to St Louis, but we feel his entire family needs to be there with him to support him and show him love through his tricky and painful surgery. So any donations that you might be able to send would go towards offsetting the cost of travel, hotels and food for Mommy, his sister Valerie and his twin brother Aiden.

   Thanks again for all the support, we truly cannot thank everyone enough for being there for us. Much love to all of you!

Our journey/feelings into words

     Over the past few years, this family has faced an incredible amount of adversity; from the very beginning we had medical problems ranging from *Twin-Twin Transfusion Syndrome that required Melissa to have two **surgeries just to try to save the boys lives, to bed rest and prematurity resulting in our family spending 90 consecutive days at Memorial Hospital where we celebrated Thanksgiving, Christmas, New Years, our anniversary, Valentine’s Day and St Patrick’s Day. In that time frame we rode a roller coaster of emotions fueled by terms we didn’t understand like: “laser ablation” and “CPAP” to terms we never wanted to hear like: “intubation”, “chest tube”, “chronic lung disease”, “blood transfusion”… the list goes on and on. We were even told Peyton had “coded” the night he was born!

     And now, in the recent years we have had to try to cope with the fact that our son is handicap. Even as I write this I felt myself have to pause before I typed “handicap”, not because I’m ashamed or embarrassed to admit it…I paused, because it hurts. It hurts his mother and I so much to know that he has been forced to struggle through meaningless tasks that we all take for granted. Imagine if you couldn’t get out of bed, sit in a chair without some sort of support that holds you in so you don’t fall out. Let alone trying to stand up out of that damn chair on your own. Standing, walking, running, dancing, sleeping…relaxing… all virtually impossible.

     Through all this adversity, Melissa and I have heard the same comment over, and over, and over again… “I don’t know how you do it!” We hear comments like, “you’re so strong”, “you’re so dedicated”, or “you’re amazing parents”… Thank you all so much for seeing that, and telling us that, your words are motivating and consoling, but there are things you don’t see… We are tired, jealous, alone, scared… I’m sure everyone try's to understand how we might feel, but unless you have ever been the parent of a child with special needs, no offense, you will never understand. But we truly thank you for trying, and want you to have an idea of what we feel.

     We would like to thank a woman who knows exactly how we feel, Cerianne, the mother of Hari, a little boy who suffers from the same disorder that Peyton does, for she originally posting this article. Fortunately for Hari, he just recently had his SDR in St Louis and will still be there when we get there. But we would also like to thank Maria Lin of the Huffington Post for writing the article “7 Things You Don’t Know About A Special Needs Parent”, she was able to put into words all of the feelings and emotions racing through the hearts and minds of special needs parents.

Below is the link to the article, I ask you to please take a minute and read what she has written. We aren’t asking for special favors or for excuses to be grumpy or on edge all the time, we just want all of you to have the Understanding.

http://www.huffingtonpost.com/mobileweb/maria-lin/special-needs-parenting_b_1314348.html

*For more information on Twin to Twin transfusion please check out: http://www.tttsfoundation.org/

**My surgery was performed by amazing doctors at Cincinnati OH Children's hospital: https://go.cincinnatichildrens.org/fetal/ttts/index.php?gclid=CLSyyoSG7K4CFSMHRQodWhY4Iw 

Thank you all!  

First night off Baclofen

Well… Last night was Peyton’s first night off of his baclofen in preparation for his surgery in a few weeks, which means; it was not a good night sleep for dad. Due to Peyton's spasticity he gets severe muscle spasms, pain and stiffness throughout his lower body, more so at night. His orthopedic surgeon prescribed baclofen and valium that he usually takes at night to help combat the spasms and let him rest.

Most people are familiar with baclofen as it is a muscle relaxer and an anti-spastic agent. It is used to treat muscle symptoms such as: spasms, pain, and stiffness. To read more on this drug and its uses you may visit: http://www.drugs.com/baclofen.html.

It is going to be a very difficult few weeks for Peyton but having him off the anti-spastic medicine will provide Dr. Park with the ability to isolate the ventral rootlets in the spinal cord that are causing the spasticity. If Peyton is still taking baclofen, it could interfere with the readings, making it appear that he is not as spastic; therefore, making more difficult for Dr. Park and his team to identify the rootlets that need to be cut.

We are still able to give Peyton his valium, but that is just not enough to help him as valium will relax him, but the spasms that are usually dulled by the baclofen overpower that causing extreme discomfort, as demonstrated last night by his waking consistently every 90 minutes.

We feel so bad for him and wish there was more that we could do for him, but at the same time we understand the need to be off of the baclofen until the surgery and will continue to get up with him and console him the best that we can. We pray he catches a break and can get a good night sleep. If he is anything like his daddy, when he doesn't get sleep he gets sick...and we DO NOT need that right now!

Our story in the eye's of the News

 Good morning everyone,

Our day has come to finally shed some light on a strangers life, or so I hope. I have always been a true believer that everything happens for a reason. It might not make sense to us when we are going through it at the time but someday if your listening, it will make sense. And to me it did a few weeks ago when I was sitting in church listening to just an ordinary Sunday message. To break it all down, the bottom line came to me when I understood it was ok to take on this (what I call bump in the road) hurtle. God knows this family can over come this challenge and rise to it. So we are, and taking Peyton's story to the News station is how we started. 


I feel that there is some family out there without the resources that we have been provided, that we can shed some light (hope) on the end of their tunnel. If anyone knows someone with symptoms please let them read this blog, or have them go to this site for medical information:
http://www.stlouischildrens.org/content/medservices/aboutselectivedorsalrhizotomy.htm


In my heart there is always HOPE! 


Our News 5 story can be viewed through the link below!         Feel free to share :) 
http://www.koaa.com/news/little-boy-may-walk-after-breakthrough-surgery/

Big Day Tomorrow!

Tomorrow is the big day! Peyton's story is going to air on KOAA News First 5 at 0530, we are so excited. Jennifer Horbelt posted the promo of the story of Facebook today and it looks awesome, we can't wait. We will give you access as soon as we have it.

Today we decided that Peyton is going to sit out his last two therapy sessions next week as there is a case of strep throat going around there. Peyton getting sick right now would be the worst thing that could happen to him. We have heard of several kiddos who have gone to St Louis only to have their surgery postponed or even worse, sent home because they were sick. So we are officially placing ever member of this family in a giant bubble starting tomorrow.  

Take care everyone! Don't forget to tune into Channel 5 News tomorrow, if you live in the Springs area of course.

TWO WEEKS FROM TODAY!!!!! #peytonsturntowalk

Good Luck Peyton Party!!

     What a fun day we had today!!! Today we had a get together with close friends to celebrate Peyton and the forthcoming end of this tough chapter in his life. In less than two weeks we will be heading east, on our way to a new beginning.

     We couldn't have been more blessed as we had 25 of our closest friends here to partake in delicious food and great company. Melissa and I would like to personally thank everyone who attended, and brought gifts for Peyton to keep him company in the hospital. We also had a few friends that had to pass on the party because their kids had fevers or sore throats, they new if Peyton got sick that might jeopardize him having his procedure. So thank you so much for being so cautious!

     Just a reminder, Peyton's news story will be aired on Wednesday now instead of Monday. And we are still accepting donations to help get Peyton's mommy, twin brother, and sister, to St Louis to support him and his daddy in his brightest hour. For those of you who have donated already, we truly thank you from the bottoms of our hearts!!!!

Enjoy the pictures everyone, we will be back again soon.

~15 More Days!!! #peytonsturntowalk

This is why we gathered! To Celebrate a new Chapter! 

Special thanks to Lori for making her FANTASTIC desert...and topping it with a "P".

I had to fend Kent off long enough to take the picture. 

Great friends, and great conversations.

Melissa walking Lisa through the SDR procedure.

Adults and kids had fun.

Lori had too much fun I think...

Aiden in mid play.

Peyton showing his mastery of shapes. 

Thank you so much for coming Lisa! The boys missed you. 

A yummy cake, equipped with an entourage of superheroes. 

Hurry and take the picture so we can eat the freakin cake!!!

Two boys, torn between cake and superheroes. 

Thanks for coming Vicki! 

Peyton DUNKING!!!! Thank you so much Lisa (Chief) for the great toy....They LOVE it!!!

Therapy Pics

     Good day everyone. As promised I attached some pictures of Peyton at therapy yesterday. It is hard to believe he only has two more sessions until his surgery. We cannot wait to see the end result!!!

     We also wanted to let you know that we received an e-mail from Jennifer of KOAA, she told us she will be interviewing Elizabeth Smart this weekend so that story will air on Monday morning, therefore Peyton's story will be on Wednesday instead. Bummer as we can't wait to see it, but at least it is still going to be aired, we just need to wait a few extra days. Besides, if there is anything this family is really good at, its waiting...

Enjoy the photos, and as always, feel free to spread Peyton's blog around to your friends and family!

~17 more days!!! #peytonsturntowalk

Getting stretched before we begin.

Aiden sharing his palm tree.  

Time to put our braces on.

Stretching and playing at the same time...Love it!

Reach for that dinosaur.

Playing house with brother.

Time to practice with our sticks. 

A little post-therapy fun at Starbucks...

Ready for the nuclear power plant inspection...

Local News Visit

     What a great day we all had today. Today Jennifer Horbelt of KOAA News First 5 from here in Colorado Springs stopped by to do a story on Peyton and his journey. She was so nice and so great with the kiddos, as you can see by the photos, they had a great time playing restaurant with her and dancing to Dance Dance Revolution on the Wii. 

     It was a lot of fun for all of us, but difficult at times for Peyton's mommy and daddy. She asked simple questions that really tugged at the heart strings, we found it difficult at times to hold back our emotions as the stress of the past four years has really taken a toll. But we made it through and can't wait to spread the word to try to help some other families. 

     For all of you in the Colorado Springs area, the story will run on Channel 5 Monday, March 12th at 0530, 0630, mid day, and evening news. We are also hoping to get a copy of the story that we can post on here for everyone outside of the Springs area to watch. 

     Thanks again for reading everyone. Peyton has a therapy session tomorrow that we plan to take a few pictures of, when we do we will put them on here so you can see the before, and then the after once he returns from St. Louis. 

19 Days!!! #peytonsturntowalk