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 analysis....it 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.