She's been doing awesome! She's been so much fun, talking, expressing herself and happier then ever! She
absolutely loves to be outside by the cows and the Sheep and loves the nurses
new puppy to death. It's so much fun to see her like this, smiling and talking
She will be having surgery may 9th but hopefully it goes nice
and smooth. Should be simple and out in a couple days. She will be having a tendon release procedure done on her feet. While it should be a simple procedure, she will be in casts for 4 to 6 weeks. This is a necessary surgery and in the long run will be better for her.
In August the Unite 4 Peyton board was honored to attend a fundraiser hosted by Sophia's Cure. I had the honor to meet Dr. Kaspar- who is on the cutting edge of research when it comes to finding the cure for SMA. I am not a doctor, and honestly most times don't understand a lot of the information that comes my way. Every time that I read something though- I always read that the cure is coming, we are so close!
That is why we must continue to fight to find the cure....we would hate to stop now- when it may be right around the corner.
Unite 4 Peyton has been busy funding grants for families that need equipment for thier child. I am simply amazed at what insurance will NOT cover for SMA families. The thought process makes absolutely no sense to me. They will cover one part of this- but not the other- huh? However One doesn't work without the other..... It seems so unfair that families with sick children would have to spend all this time fighting the insurance companies. Trying to justify that their child needs a chair to be able to sit safely, and properly supported, or a cough assist machine in order for their child to survive.
We just wrapped up another Thanksgiving- and we were blessed to be able to spend it with Peyton and Kylie! Peyton was so animated! It was great to see her laughing, smiling and chatting away! She was watching football with grandpa (which she said she wanted to watch!) Then her and I played blocks for awhile. When I told her I had to leave she said NO!! I love her communication- and the fact that her and I can still hold a small conversation! She is a fighter!!!! I know that one day we might lose her ability to talk, and say NO- but today I am very thankful for it!
Unite 4 Peyton is so proud to release our official logo! After review of several concepts developed by Talisman Studio, the board came to agreement on our new logo. You can view the logo on the Home page of our site!! We felt that it was important to have something that would really represent what our organization does. The concept is based off of our motto "Supporting Spinal Muscular Atrophy Families" U4P is the tree and the children and families are the hearts in the tree! This logo clearly represents U4P, what we do, and what we are going to do in the future!!
Currently we are working on having T-shirts, canvas bags, hats, etc. printed with our logo on it! Hopefully soon, you will be able to purchase your Unite 4 Peyton goods!!!!
On August 15th, some of the board members will be going to a SMA event in the Big Apple. One of our favorite organizations that support SMA, Sophia's Cure is having a benefit. Vincent and Catherine Gaynor are so valuable to the SMA community. Their knowledge in the medical research side of SMA, along with the great way they communicate with SMA families is invaluable! We are very excited to go to New York, and see what great things they are doing!
I think people who are not involved every day tend to forget how tragic SMA is. People see a "disabled" child, smiling ands happy but don't see the real disability, respiratory........
Any of these kids could pass at any given time, no matter what. They can be in the "best of health" for their condition, it doesn't matter, SMA doesn't care if they are watching a movie, taking a nap, taking a bath,moving them from one room to another, taking them to their own birthday party, going to see nana and grampa, their aunts, uncles, friends, going to school...get it. These parents smile, laugh and live but if they are like me, they are scared shitless everytime you roll your child over........i live in constant anxiety, never knowing when I'm going to be called to save my daughters life......
Everytime you do a simple activity, moving her from her bedroom to the living room, I sigh in relief that she is still alive. I live my life in fear, at night, constantly listening to monitors, waiting for alarms, listening to her breathing, making sure I hear her feeding pump running..........afraid to say goodbye when I leave for work cause it might be my last..... Peyton's Father
Peyton's birthday was April 14th, she turned 4!!!!! WOW, what an amazing day it was!!!! What a blessing she is!!! The doctors said she wouldn't make it to see her 2nd birthday and here we are watching her grow like a weed!! We went bowling for her big day!! It was so much fun to see her bowl with her sister and cousins. She loves being out in the real world, even though it makes the adults a little nervous. We would like to put her in a bubble to keep her safe from all the germs that are lingering around, but we know that is not an option for us. So, we take a leap of faith, (and all necessary precautions) to let her have some fun outside the house too. She did amazing bowling, and managed to win both games!!!!!
I almost lost pey tonight. I believe she through a plug and stopped breathing. I helped her fight for her life for 45mins before I could get her somewhat stable and another hour before transport to the hospital. It was the scariest thing I've ever seen. When I say fight for her life I mean it, I truley thought she was going to die in my arms. It's something that a lot of sma parents deal with constantly, this is the closest I've been, I wouldn't wish what I witnessed on anyone.
We are at waukesha, stable, shes back to her sassy self like nothing happened, extremely exhausted tho. We are being transported to madison to make sure shes all good.
I never knew how good it would feel to have ur daughter yell at you. Brings tears of joy, yell away peyton, sassy daddy!
I love you more than you could imagine and would trade places with you in a heartbeat!
Peyton has been really up and down the past few days. Well, not even days, it seems like she is up and down hour by hour. It is really scary how fast things can change in the SMA world. There is no time to be complacent. If you know SMA, you know that there is no down time. Even when your child is well, you still have to do all the treatments, follow all the protocols, and still worry that they will "plug". ( I will explain that later)
This blog is going to be a bit different. I have not been to visit Peyton yet. I have been getting all the updates via text and Facebook status's...so I thought I would go over the last few days and give a clear picture of how things change so quickly........
"Peys in PICU in madison, mad as hell, which I'm happy for. She crashed today and was transported to waukesha, madison then sent there mobile ICU, CHETA, to transport her to madison. Mom went with her, me and Ky are on our way.
Btw, if you don't know wht CHETA is, look them up, they are absoulty awesome!
American Family Childrens Hospital with Dr. Schroth and her staff is amazing, I feel safe putting Peys life in their hands."
"Finally here, shes on Q2, which means she gets a respitory treatment every 2 hrs which, you can imagine, she gets no sleep, this is wear it takes a toll! We're on isolation, which means we can't leave the room"
"Update, good spirits, talking up a storm, laughing and playing, still really junky tho"
I wanted to clear some things up about Peyton. Like who she is to me, what she has and why she has to go through the things she does. First off, I am Chris’s sister(Peyton’s father). Peyton is my niece and Godchild. I love her as if she was my own child, and I would lay my life on the line, if it meant saving hers. I have made it my mission to find the cure for this disease. Peyton has Spinal Muscular Atrophy, which is the leading genetic killer in infants under the age of two. Now, if you have been on this site before you probable know what SMA is. However, since this blog is posted on several other sites, I will give you a quick run down on what SMA is. SMA affects the nerves that control muscle movement. Peyton is four years old and cannot hold her own head up; she can make very small movement of her legs, but not bear any weight on them. She will never walk. She has very limited movement in her arms, and can’t hold anything much heavier than a pencil. She can’t swallow, so as an affect now has to get her nutrients through a feeding tube in her stomach. She also can’t cough. She can’t sit up for long peroids of time, because she can choke on her secretions. So, as a result she spends most of her time lying on her back or side. It is taken for granted how many things we use our muscles for. But when you see a child lose the basic functions over time, you become painfully aware. She still has her smile (which is sometimes lost) because that also requires muscles. Her ability to speak is greatly affected, because that also takes muscles. Even though she seems like she a lot to say.
Her mind is not affected. She is a very smart little girl with lots to say, but it is limited because of her disease. She is trapped in her own body. Everyday we go through so many emotions about SMA. Some days were are overcome with the heavy burden of sadness, sometimes it’s confusion, some days it’s guilt, today I am just pissed!!!!!!!!
When a healthy child gets a cold, the protocol would be some tissue, snuggle time and chicken soup to nurse them back to health. For a SMA child, a cold means fighting for life or death. Because they can’t cough, and have extra secretions on a normal day, they are at a much higher risk. The sick care protocol for a SMA child means extra suctioning from their nose and mouth. When I say mouth, it’s not like going to the dentist when they suction you. No, this is down your throat into your windpipe…I can’t even imagine. It means extra time on the cough assist machine, which pushes air quickly into the lungs and then pulls it out. It means having to wear a bi pap mask 24 hours a day, just to be able to breath. Now, all of these things happen on a “normal” day for SMA. However, when they are sick…. it means a lot more of it. Everyday an SMA child fights for life, so when they get a cold it literally could mean life or death. We are not exactly sure what Peyton has right now, they have tested her for RSV and pneumonia, but the fact still remains, it could just be a cold.
Another question that has been asked is why does she go all the way to Madison American Family Children’s hospital. SMA is such a rare disorder, and most children die before they turn two years old. We are soooooo incredibly grateful that Peyton will be turning four in April. We give a lot of the credit to Dr. Schroth, from AFCH. She is the best Dr. in this area to treat SMA children, and the hospital staff is incredible knowledgeable with the treatment’s that are necessary for them. Put it this way, today Peyton was taken to a hospital that was closer to her house. She was so unstable; it wasn’t worth the risk for her to be transported by car. The Children’s hospital in Madison has an outstanding ambulance service C. H.E.T.A. that is set up to transport children like Peyton. If you would like more information about C.H.E.T.A., please visit this link, http://www.uwhealth.org/pediatric-sedation/emergency-response-teams-cheta/10773 however, they are 45 minutes away. So, Peyton was taken to a nearby hospital in order for her to get stable. I was stunned by the fact the Peyton’s parents were the ones that were doing the suctioning, coughing and taking care of her, while three Doctors stood behind them doing NOTHING. Why, don’t they do anything? Simple, they aren’t trained how to care for a SMA patient. Peyton’s parents are obviously stressed, scared and emotionally drained by just the fact of their child being in the hospital, but then they are also the ones that are responsible for keeping her alive once she is there?? It is mind boggling to me….
Things change so fast…. people say that all the time. It really is true though! Today was just a normal day, business as usual. Then I received a frantic call from Peyton’s dad saying she was being rushed to the hospital. I had just seen Peyton two days before that, and she was great! However, last night around 4am, her alarms on her machines started going off. Her heart rate was all over the place, and her O2 was low. Over the morning Peyton’s mom and the nurses accessed the situation and decided that she should be taken in. It was rough when they first went in, but now Peyton is stable. She made it through the transport well, thanks to C.H.E.T.A. Why can’t she go in a regular ambulance? Because they are not equip with all the machines that Peyton needs to survive. The C.H.E.T.A service is, and we are so grateful for that. Her heart rate is up, she has a temp of 101, and her O2 is in the mid 90’s on 8 liters. She is going to have a rough night ahead of her, but she is in the best possible place now. We will see what the next days bring. Thank you for A.) Keeping Peyton in your thoughts and Prayers and B.) For letting me rant a little
Sometimes when I take a step back and take it all in…it takes my breath away. That is why we must all fight and this is why I fight to save her.
Almost 4 years ago when Peyton was diagnosed, we were at a loss. We had no idea where to turn, what to do, and how to handle the news we received. The thought of Peyton not living to see her second birthday was something we were not able or willing to comprehend. The doctors were throwing such foreign terms at us, "cough assist machine, pulse ox, bib pap, g-tube"...and the list went on. All we could and wanted to focus on was Peyton. We wanted to spend as much time with her as possible, and suck in every moment, every smile, every facial expression, every small movement she made, because we quickly learned in the world of SMA, it could be her last.
Dealing with a SMA diagnosis is the hardest thing our family has ever had to endure and you can never be prepared for it. The financial burden that SMA places on a family could be just as devastating. Just some of the costs associated with SMA are:
- Conversion van with lift- $50,000 or more
- Cough Assist machine- $3,500
- Bi-pap/Vent- $3,000
- Power chair- $35,000
- Traveling costs to see SMA specialists and Doctors
- Ipads for Education $800
- Touch to Speak
Some of these items might be covered by insurance, however, some of them won't. We wanted Peyton to have everything she needed. She deserved it! So we started doing small fundraisers in our town for her, to help us fund some of these items. Three years later we have now created the Unite 4 Peyton foundation. Our mission is to raise funds to assist in medical research towards finding the cure for SMA, along with funding grants to families to help ease the burden of SMA. We have grown so much in these last 3 years, from our understanding of SMA, to meeting new families, becoming a part of the SMA family and now it is our turn to give back. We want to help new families and those who have helped us in the past. Our goal is for every child with SMA who wants an Ipad has one. To help every family that needs help with getting a new van or lift gate. If a family wants to go to the FSMA conference, but doesn't have the funds to do so, we want to help. We have been very fortunate, Peyton is going to be 4 in April, and she has what she needs. It was a struggle in the beginning, but we turned to the countless resources that are available to SMA families for help. We now want to give back and be one of those resources also. We are so grateful and blessed to have this opportunity to help!! Please if you are reading this, and you need help, or you know a family that does, pass the word. The very last thing we want a family with SMA to worry about is money. Now, can we fund every request that comes our way? No. Will we be able to buy your family a van? No. But, what we can do is help where we can and we will continue to work hard to raise money to do so.
Sometimes it is so strange to me, to think back to three years ago. From our complete devastation and loss of hope, to now. We have learned that through every situation, every obstacle, something positive can come out of it and we are proud to be a part of it!!
Peyton has been under the weather lately, it started late last week. Everyone has been working hard to help her recover from this latest round. Her heartrate and oxygen levels have been up and down. Lots of prayers have been coming our way and we thank everyone for them. On a brighter note.... A new friend has come into the house, it is a hamster!! The girls just love it!
I am blessed to be the Aunt of Peyton. She has changed my life in so many ways. I will fight, to save her life and the lives of so many others with SMA.