A sense of Peace!

We had a clinic visit in Iowa City on Friday April 20th. It went well. We saw Peytons Neurologist who seemed to be in her words delighted to see Peytons progress over the past few months:) she also said that she thinks that we drastically slowed down progression of his disease. Something I can't begin to explain was a huge relief just to hear those words. All of his numbers looked amazing as well. Bone Marrow is very pleased. All in all he had a very good visit and we left feeling a sense of peace for once in the last year! Peyton always likes to keep us on our toes. At least this is what I have decided! On Sunday, Peyton Had a "lazy" day. He just kept to himself most of the day and then slept a lot of the afternoon. Didn't think to much of it since he went to my nephews swimming birthday party the night before and was having the time of his life :) so I figured he was just exhausted from that ! Well in the evening he decided he wanted to eat a corn dog, he loves them almost as much as he loves pizza. The only thing different was he wanted mustard with it..no big deal. Two corn dogs and mustard later, Peyton's lips and face started swelling. In the time it took me to walk to the kitchen for a rag and back his lips had gotten twice as big. I was scared to death! It's different when we were in the hospital and he had his allergic reactions. They worked fast to help him. I was at home with all three boys by myseLf. In a panic, I called Jason. He said to me ...Jess dont call me call the doctor or 911! Really, why didn't I think of that?!?! So I called Iowa City and they said to get him to a ER right away. After three pokes in both arms and his hand and them moving the needle all around with no luck , I refused to Let them try again. So they had to give him two shots in each leg. The only thing that makes sense is that Peyton had a allergic reaction to mustard. We have been having to alternate between Benadryl and HydrOxazyine every six hours to keep his swelling under control. Trying to stay away from steroids if we can due to Peyton's cortazole level being very low. Cortazole is the body's natural steroid that it makes and Peyton is currently not making it...we might have to supplement him, but we are giving him a few more weeks before we make that depiction. Or the doctors are I should say :) All in all he is doing much better now!! Another Great thing that happened this week aside from clinic visit, Peyton's PT actually for the first time felt Peyton's Gluetial muscles contracting while trying to get him to stand last week!!!! The first time we have EVER since he lost function of his legs :) That has to be a miracle right?!?!?!?! Just hoping that is a start of something amazing! Prayers that Peyton continues to improve slowly buy surely!! He is my super hero for sure! With hope and love

Day +215 post transplant

To look back at the last 215 days the first thing that comes to my mind is.....ROLLERCOASTER! And it truly has been one for all of us. We have watched our son go from a perfectly active 5 year old to a now 6 year old who is different in so many ways. Peyton has been requiring a lot of help lately with eating and drinking. Basically I have been feeding him and holding his sippy cup for him. Now I know what it's like for moms with twins since I also have a 9 month old to physically feed too! I think at times Jason and I get greedy because we want him to keep getting better but faster. I think any parent would. When P first came home he was making progress so fast, it made us so excited because we didn't expect that. But we have just stayed here now. A few more baby steps I guess but we have noticed no change from his waist down and neither have his therapists. His Neurologists had warned us from the beginning that she believed he would lose function of walking because he was progressing so quickly, which juvenile MLD usually progresses slower but Peyton from the time he was diagnosed( may) until we went to U of I for transplant( aug) was night and day. He was barely walking unassistedly. You think you prepare yourself, but NOTHING can actually prepare you for it. I think all of this time I have been in " warrior" mode as a great friend has lately pointed out to me. With it rapidly approaching the one year anniversary of when Peyton was diagnosed and we have been home for awhile, I look back and truly reflect on all that has happened to myself and my family over this past 11 months. She pointed out that it is almost like a post traumatic stress disorder. when I stopped and thought about it, she made perfect sense. So I thought about this for awhile...how much my mind and my body had been through in the last 11 months. Peyton's diagnosis( devastating) ,the gift of a new life ( 29 days later) ,going to treatment (rollercoaster), but when I really thought about how I had been feeling.....it was NOTHING compared to what my sweet boy and his body has been through. How do you understand at 5/6 that you have a terminal illness? How do you understand that you are all the sudden so different and don't really know why? How do you get up everyday with a smile like it is the most beautiful day in the world? HOW? Peyton has been the bravest boy through all of this. Never complained. He has been going through so many emotions that he doesn't even understand and he has done it fearlessly! He is my HERO! I wish I could be half as brave as he is. My goal is to live day to day like Peyton. Brave and with a smile. I cant let MLD run my life! This is just the way it is..being upset, mad, frustrated...none of these things can change it. Of course there will be bad days, anyone would have them. It is not a sign of weakness but more a sign of having a heart and soul. I will no longer look to the future and get upset because there are no answers. In life there is never a guarantee. One day at a time, one hour at a time and even sometimes....one minute at a time. That's all we can do! But at the end of the day, I thank God first and foremost for keeping him here with us. The fact that he is HERE is the best gift of all isn't it?! No matter how he "is", he is here! With hope and love Jess

Giving and receiving

It is when people are at their lowest point that friends, family and even strangers show true colors. Our family has had the privilege of getting to know and meet so many amazing people and families throughout our journey so far. Some of them close and others half way around the world. The one thing that has amazed me the most are how big some people's hearts really are! Until you have to worry about things like handicapped equipment, formula, medical supplies, special needs cars seats, handicapped strollers, etc. you have no idea the hoops people go through to get the things they need for their child/ children. It frustrates me to hear people talk about their insurance companies do not find it " medically necessary". If a child needs something, how is it " not necessary"? Jason and I have been so extremely blessed. For the most part insurance covers what Peyton needs. And for the few things it hasn't they have been graciously given to us by other families! A special needs car seat that will fit him for some time to come was the most recent thing. Peyton went into the hospital in a regular booster chair like any other 5 year old. But coming home, things were much different. We originally bought a regular Graco 5 point harness seat that worked ok, but over the last few months doesnt seem to work for longer distances...even the hour it takes to go to U of I. Our insurance doesn't pay for special needs car seats. They don't find them " medically necessary". So a family no longer needed the one they had and the Hunters Hope Foundation payed to ship it to us. AMAZING. It looks great and Peyton loves it. He is so comfy in it. It made me tear up. Those cost over $700 and someone gave it to us. WOW. We have also been given a handicapped stroller that tilts for Peyton. He currently is unable to use his power chair. Also we were given a swing for Peyton to use. It fit perfectly on the swingset and it allows him to do something he has always loved! It's amazing acts of kindness such as these that make things a little easier! On another note. Peyton received something in the mail the other day. A signed football from Hall of Fame QB Jim Kelly from the buffalo bills!!!! Jim and his Wife Jill are the founders of The Hunters Hope Foundation. Their son Hunter had Krabbe Leukodystrophy. It is an amazing organization so if you have the time check it out www.huntershope.org take a look around. Check out their hunters wall of fame :) Peyton is on their! So our plan is to give Peyton's medical equipment that he no longer needs or grows out of to other families In need. In hope to make their journey maybe just a little easier! With Hope and Love Jess

Blessings

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 house....as it may be loud, it is a gift!
To hear our beautiful baby boy Parker blabbing on and on....it 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!

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.