Wednesday, March 21, 2012


Of all the things that have happened over the last 10 months, I still cant help but stop to look around and feel extremely blessed.
I have 3 amazing children all different, but all equally important and special in my life. The simple sounds of life remind me to thank GOD. The fact that we are still able to hear our sweet Peyton's contagious laughter is a gift.
To hear our Birdy (Preston) running all over the it may be loud, it is a gift!
To hear our beautiful baby boy Parker blabbing on and again is a gift.
None of us know what tomorrow will bring. Things happen to all of us in this world. Some that we have no control over and others...well sometimes i think it is a test from God to see really how strong you are.
I have often been told that God never gives us things that we cannot handle. And to somewhat i believe that. Sometimes I question how strong he thinks I am (haha).

If I have learned anything through this so far it is to embrace every moment that you are given. Make everyday with the people you love count. Let them know what they mean to you.
I often take for granted how much we need Daddy ( my husband Jason). You see my husband works very hard so I am able to be home with my kiddos. We like life this way. Not only does he work 80+ hours at work in a week, but he comes home and does whatever laundry I was not able to do that day. Sometimes cooks dinner if i haven't been able to start it yet. Goes to the grocery store for me. Takes care of paying all the bills when they are due. All extra things things that can easily be forgotten by me :)
He truly is my rock....

Our Gaga ( my mom)...without her i think life would fall apart ( literally). She is the glue that holds us all together. From her beautiful heart to amazing optimism....She keeps us going.

So today I say reflect on all the amazing things that are Gifts...Children, Sounds, Friend's, Family, LIFE!

Sunday, March 18, 2012

6 months Post Transplant

So I am starting this blog a bit late....but I have been busy :) So I will catch you up as best I can! For 5 1/2 years we had a perfectly active "normal" child. And one day in February 2011 something was different. Peyton was different. From February until the end of April, Peyton kept getting worse. He was in a lot of pain, he walked "funny", he was falling all of the time. We took him to The University of Iowa Children's Hospital to see a Neurologist because we were concerned after no one locally could give us answers. Our life was forever changed in May of 2011 when Peyton went for what was suppose to be a routine MRI of his brain. It was our worsed fear. Peytons white matter in his brain was the "wrong color" and that was consistent with the diagnosis of Leukodystrophy. Of coarse we had genetic testing, blood work, urine was all confirmed. Our son had Metachromatic Leukodystrophy and there was no cure. The doctor told us that he would progressively get worse over time and lose function of everything until eventually death. And there was no timeframe except that it was likely for him not to live into adulthood. Our only option to even try was a SCT or BMT. And even then, It would only slow down progression at best while at the same time putting him through the transplant would speed up the progression and there was no way to know how much. You see, the reason for Stem Cell transplant or Bone Marrow Transplant was to destroy his immune system with Chemotherapy and inject the new stem cells into Peyton and hope that he engrafted and eventually the new cells would produce the enzyme that Peytons disease has robbed him of. This enzyme is called arylsulfatase A and Peyton's body lacks it. So over time without this enzyme, there is build up in his brain causing miscommunication between the brain and the nerves. This is how he loses function. MLD affects the brain, spinal cord, central and peripheral nervous systems. On the down side it could take anywhere from 12-24 months after the new stem cells were infused to start producing arylsulfatase A and until his body makes it, he will continue to decline. The transplant will not change any damage that has been done to Peyton's body. Peyton was inpatient at The University of Iowa Hospital for transplant from August 22, 2011 until November 29, 2011. He engrafted on day +20 and was 100% donor by day +30. Fast forward now.....we are currently 6 months Post Transplant. Peyton is doing quite well considering. He has lost function of walking, sitting, standing, head control, trunk support and speech ( very hard to understand him )from transplant. When returning home just in time for Christmas, Peyton started therapy with HIS therapists! He began Physical and Occupational Therapy as well as Speech. He has made improvements. He is able to sit for several seconds before falling over. He can move his legs and arms. Head and trunk control has improved although we still have bad days. His speech is varies from day to day. Still very muffled and hard to understand most days. Peyton does not stand or walk. We currently do not have a "prognosis" for Peyton. We don't know if the transplant is slowing down his disease. We just wait. We take things day by day and make the most out of every "good" day that we have.