Monday, April 23, 2012

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 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

Thursday, April 5, 2012

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 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 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 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

Tuesday, April 3, 2012

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 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