Tuesday, July 24, 2012

It's Been Awhile

Sorry to all of our followers! It has been way to long since I last updated on this blog. Peyton has had ups and downs over the last month. The good things to report are that Peyton started at a new therapy Center and has been making amazing steps towards moving forward:) He has been able to take 6 steps holding hands. He is able to walk on a tredmil that has a harness on it to support his upper body. And we used what is called a walkable and it has a harness on it to support him and he can walk on the ground. He still has to be completely supported while using those but the fact that his legs can move all on there own in just incredible. He has been doing OT and Speech as well and doing very well and improving in those too:)
I cant say enough how much he inspires me every single day. He never gives up and just keeps fighting even through the pain.
Which brings me to my down part of our update. Peytons nerve pain has been out of control lately and we finally got him back on Neurotin or Gabapentin. He was on this before and it helped a lot, but we had to take him off of it due to causing fevers and at the time he still had his central line in...so we took him off. Hopeing that it starts to kick in sooner rather than later and he gets to feeling better. He also seems to be having more "out bursts" . Not sure if it might be behavioral or not..assming it probably is but I have to admit that with all he has been through, if he needs to vent a little, I dont blame him one bit ( I would too).
All in all we are moving right along. Summer break is almost over and Peyton will be off to first grade. I cant believe that he is almost a year post transplant already!!! If you would have asked me 6,7,8 months ago where I thought our family would be today......My answer might not have been so good. But to look at how far Peyton has come in the last couple of months, It gives us a new hope that he can continue to get better. We know it cant be like it was before......but I have a feeling he is  going to get closer than anyone thinks ;)

With Hope and Love

Saturday, June 16, 2012

Having Hope

I'm sorry that it has been awhile since my last post. Peyton is doing well! He has been battling some respiratory issues since late April but hanging in there strong:) May was a rough month for Peyton. He was sick which seemed like the entire month, he had his 3rd set of tubes put in his ears. He had 2 allergic reactions, we were in the ER with him 4 times. I think i could keep going but I'm sure you all get the picture!
On a better note, we had his clinic visit with Hem/Onc on May 25th and all of Peyton's numbers were normal and he again was 100% donor ( his cells). We could not be more thrilled with how well he has done with his transplant! He is off ALL bone marrow medications!!!! A huge sigh of relief!
On June 1st we traveled to Orlando for Peyton's Make A Wish. He had the BEST time, and his wish came true to feed the Dolphins:)
We arrived home on June 7th and barely 24 hours later we headed to the ER with Peyton. He was diagnosed with Bronchitis. Another respiratory problem. Ugh. I have discovered that a lot of these MLD kiddos have this problem. Thank GOD it has not turned into pneumonia yet. He has a big enough chance with aspirating. So it has been a long road over the past several weeks, but Peyton is still smiling and that's what gets us through each and everyday along with our hope.
Hope for Peyton to continue to make steps toward improving. Hope that he WILL get up and take steps. Hope that he WILL have the bright future that he deserves to have. Hope for a CURE to this disease. We Have Hope.
They say God never gives us more than we can handle......well I am not sure about that yet! But I do believe that there is a purpose for the paths we are chosen to walk. A purpose for the heartache and the tears. God has tested our family over the last year or so and out of it has come more LOVE than you could ever imagine. I have tried my best to take Peyton's disease and turn it into a positive. To help others as much as I can. To raise as much awareness as I possibly can. To bring hope to others. And in my "free" time, I think I am doing a good job at those things.
Our family is finally getting into a routine of our new life that seems to change daily and I think we are adapting well. It has taken time. Peyton is stronger than all of us combined and He is the rock that holds us all together!

With Hope and Love

Monday, May 28, 2012

One Year Since Diagnosis

 Peyton had a check up in Iowa City last Friday May 25th, it marked one year from his diagnosis. To think that he has been fighting this horrific disease for an entire year just astonishes me. He is so brave and strong. Our clinic visit was amazing and all of Peyton's numbers have recovered fully from transplant. I could not have asked for a better team to take care of our son. The Pediatric Hematology/ Oncology in Iowa City is amazing and I cannot thank them enough.  They are always so glad to see Peyton and how he is improving. Sometimes I think they are as happy as we are...I know they are! To think of everything that the body goes through to have a bone marrow transplant or a stem cell transplant is unbelievable....but Peyton really just sailed through it all with a smile on his face. There were days that felt like years, but somehow we made it through all of it and that was because we had amazing support from friends and family, prayer and most of all God.
When bad things happen, your first instinct is to be angry and say how it is not fair and why you. But when you find peace within your soul that is when things get better.  I always say.. "In life you are dealt a hand .....now what you choose to do with that hand is up to you."
Meaning that it is always easy to "fold" your cards and say, " I don't want that hand", but the true warriors are the parents that choose to "play" the hand and fight through it all.
Peyton has been doing amazing over the last couple of weeks. he seems more alert and wanting to do things. I finally think for the first time that when I look at him, I don't see a sick boy....I just see Peyton. The sweet, bright blue eyed boy with a smile on his face. I don't see the wheel chair, or the equipment or the pull up pants....I just see my sweet boy. It is almost like i feel that we have been doing this all his life even though it has been a very short time.
A dear fellow LD mother said something that has stuck with me...Her son has the same disease as Peyton and she says how frustrating it is to have people stare, which IT IS!
She posted. " Thank you for noticing that I am a miracle so smile at me instead of staring".....How powerful! These children are miracles!
Don't stare at people with disabilities. It is OK to notice them....but to constantly stare and whisper...weather what your saying is kind or not..IS A TERRIBLE FEELING. We are just families trying to move on with our lives in the best way that we can....and do ordinary things. Think about that next time you are out in about!

So to wrap things up our One year has been filled with tons of emotions but most of all.......hope and love!
Counting down the days until we leave for Peyton's Make A Wish.......we leave in 4 days!!! so the next post will be about our amazing time and pictures:)

with hope and love

Thursday, May 17, 2012

Life's Choices

Next Friday on May 25th , it will be exactly One year since Peyton was diagnosed with Leukodystrophy. There are days that I cannot believe that it has been one year and there are other days that I feel like it has been a lifetime since then. It absolutely asstonishes me when I think of all my family has been through in a year......So as we approach this day, it is bitter sweet for me actually. This days will forever mark a turniong point in my life, my families life.

Peyton has had a lot of weird things going on lately...nothing major, but just overwhelming. Its hard to get the attitude that nothing surprises you anymore. I feel like we are getting to that point. It feels like when things are calm, that is when it doesnt feel right....not the other way around. I do not live in denile about Peytons disease. Accept the things you cannot change. We have accepted this....that doesnt make it easier. It doesnt make the pain go away. So with all of that said, we have made the decision to have shift nursing here to help me when it comes to Peyton. This was the hardest thing to decide. As a  mom, you want to be everything to everyone. And most of the time I can be. But at the same time.......i am wearing down. I am exhausted 99% of the time. I am constantly telling one of my kids to hold on a minute.....well most of the time that minute turns into a hour and next thing I know, my 4 year old is crying for that drink he wanted which leads me to cry in the bathroom because I forgot to get it when I was finished doing something with Peyton, or Parker. I felt like if I took the help that I wasnt going to be a good mom. Because I should be able to do it all.
The truth is , I am a good mom, and by accepting help for Peytons safety and health makes me a even better mom i think. Being a mom of three kids is hard enough, but when you add a handicapped or special needs child to that mix....it is a totally different ball game. He requires constant care. He needs help with all aspects of daily living. I am not complaining because I love him no matter how he is. But my other LD moms know and understand what this is like. So I have decided that we will have a nurse come into our home 3-4 days a week for a few hours and help out with Peyton. Do some of the medical things that takes so much of me away from my other two kiddos. People dont realize that I cant just take my kids outside to play by myself,  or take them for a walk. I cant just load them up and go to the store. I have a child in a wheel chair, one in a stroller and a toddler that is typical and wild. It is impossible,  and my husband is the sole provider for our family and works A LOT of hours and swing shifts. It will be hard to let someone else help but at the same time be great. The amazing thing too is that this way he will also have a nurse go to school with him.....which makes me feel 100 times better about him going :)
We had our big AEA meeting today and it was a relief to know that we are all on the same page for Peyton and school. He will attend Hoover Elementary in the fall for 1st grade. ( tears) I cant believe he will be in 1st grade!! Peyton will be in a regualr class setting. Not a learning program. Also today, he pushed off of his legs and stood without any support except for holding on to someones hands!!! Yes, I CRIED! It was absolutely amazing, I am so proud of him. He inspires me everyday!

With hope and Love ~ Jess

Tuesday, May 1, 2012

Preparing for 1st grade : /

Peyton has not even started school yet and we are already climbing a up hill battle. All of these evaluations in my opioion are ridiculous! How many people from the Area Education Agency have to come and give their opinions before we can just get the darn IEP written to be prepared for fall?!?! For those for you who don't know a IEP stands for Individual Education Plan. This is where everyone comes together to fit all of a child's needs into their schooling. Sounds easy right? Has not been so far. We have a final meeting on may 9th and depending on what they have to say, Jason and I will determine weather or not it is best to just homeschool Peyton or not. I would like him to go to school and make friends and have that experience, but I refuse to let them put my son in a category he is not in. I will not stand for that! Basically long story short is they have done no cognitive testing on Peyton( he is having that done in June in Ia City), so without even knowing where he is cognitively ( which is a normal 6 year old) the AEA tried telling me that due to his extreme physical needs he must have educational issues as well. Since when does a physicslly handicapped child have mental issues as well? In some cases yes, but not all! I was not only upset but just beside myself. Now if Peyton had a learning problem then I would be 100% on board for anything to help him adapt. But for anyone who really knows Peyton....knows this is just not the case. This is a child who by the time he was two could recognize every single one of his letters and numbers. He has been spelling since he was 3 1/2. He never had a single issue in preschool with learning. And i know that the cause for concern does not stem from his disease and the cognitive changes that can appear because none of them even know what it is nor have they bothered to look it up I'm sure. One of them thought he had Musculardystrophy. Not even close to the same thing. ( not that it isnt terrible too) This is all just so frustrating and the more I think about it, the more I get upset! If any of you parents out there have had similar situations and can offer any advice, I would greatly appreciate it! No matter what Jason and I will do what it absolutely best for Peyton. With hope and love Jess

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 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

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 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