Sunday, April 8, 2012

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 Follow Up

     

Monday, April 2, 2012

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