I Believe in Superheroes

I believe in superheroes. My brother wears his superhero cape and mask around the hospital as it shows his strength and his courage as he fights this battle against Mitochondrial Disease. It’s a disease with no treatment, no surgery, no magic pill, and no cure. My brother, Tyler and I both have several rare, incurable diseases and this has brought a bond between us like no other.

I was twelve on April 16^th, 2011 when Tyler had a seizure in my arms. I remember screaming for help, thinking it was my fault, collapsing on the ground crying with my younger brother, not knowing what was happening or if he would survive the night. Tyler turned blue within a matter of minutes and ended up having two seizures that night. Soon later he was diagnosed with Mitochondrial Disease and he is still showing the world what amazing things he can accomplish despite the obstacles that are in his way.

Since then Tyler has cheated death twice more making our total five times. Which is way too high for an eight-year-old boy! I will admit the facts and statistics scare me because I know I will probably loose my best friend but I pray every day a miracle treatment or cure will come. I just hope it comes and saves my superhero before it’s too late.

Over the weekend Tyler and I were talking while I was pushing IV medication through his Arteriovenous fistula and several things he said reminded me of the past. We were just having a normal conversation about something funny and then he said he had something to say. I listened and he broke my heart. I hate it when he says he feels lonely and scared. He told me how thankful he is to have me so he doesn’t feel so lonely because I understand the pain, the tears, the tubes, the wires, and the hurt. I started to cry. It’s not fair that an eight-year-old boy says he wants to rip his tubes out because it hurts too much. Sadly, this is the reality of Mitochondrial Disease.

Through everything that has happened we are both somehow alive today. I think it is because we have each other. Being sick has made us best friends ever since day one. I am proud to be his sister because he has shown me how to live my life a little differently than most do. Before I finished giving him his medicine the last thing he told me was “But life is just life, you know? Whatever happens, happens.” 

Superheroes are supposed to sacrifice things in their life for others and that is exactly what Tyler does. Everyday Tyler could only care about himself and how much pain he is in. Instead, he puts others first including myself. It is just something we have always done since the beginning. Having two sick kids in our family is hard enough on our parents and siblings. They need a break just as much as we do. Even though Tyler is hurting so bad he takes the time to worry about them before he worries about himself. Tyler defines what a true hero is courageous, bold, and a fighter.

Independence

At fifteen years old most normal teenagers take care of themselves,  make meals, go to bed by themselves, shower by themselves, and manage their everyday needs however that isn't the case for me. My disease has taken away my ability to play sports, go to school every day like a "typical" teenager, to drive, to shower alone, to get dressed without help at times, to eat or drink, sometimes I am physically drained to where I can't even give myself my own medication, and to care for my daily needs. Most doctors and people don't realize that chronic illness is more than just being sick and feeling ill. It's the emotional aspect of the disease. How you manage and cope daily. Do you think you could have all of your independence taken away from you at once? How about losing your independence at fifteen and needing your mother to help you shower daily? All of this just ripped away from you at once...sometimes I think I'm handling it pretty well other times not so much. It is really hard I will tell you that. I always feel people forget I am only fifteen years old and trying to manage a "normal" life despite the conditions. You have nights where all you do is sit in your room and cry and cry and cry you don't stop, other times asking God why he chose you and just being angry at everyone because you aren't "normal" in a world that hates those who are different. I start the day the war begins another day where I have that constant reminder I can't do this or that because I am sick. At the moment I am not entirely happy with the situation I'm in. I don't think anyone would be happy if they were me either. However, this battle has only started and we have a long way to go to beat this! Maybe, my disease can stop me from doing all the things I want in my life but it can't stop me from doing the one thing I will always do. I will Never Lose Hope...and that is a guarantee.

Discharge

After a week in the hospital I will be heading home! I was admitted last Thursday for my migraines because they got worse after my surgery. We started a new treatment which failed. We have tried several other medications including pain meds and nothing has worked so for now I will be going home because they cannot do anything else for me here. The doctors have sort of run out of options and ideas on what to do next. I will be headed to Atlanta shortly to see a pain specialist, Nationwide Children's hospital to go see a neurologist there also their GI team, and an adult neurologist local will try Botox injections to see if that can help. For now that's really all our plan is because we don't know what to do. It has been an extremely emotional hospital stay that has definitely taken a toll on me. I hope being out of the hospital and trying to manage at home will help me with all this. About to go home! Good bye!!!

Life

but life is just life, you know? whatever happens, happens. Tyler told me this last night in the midst of a conversation we were having. It kind of shocked me when he said it. I mean I was already crying and boom. He just acts too old for his age sometimes. He knows too much because of what this disease has put him through and I hate every minute of it. The same disease that has robbed him of his childhood, hasn't let him be a kid or let him go to school. He told me he likes having someone just like him (referring to me) because sometimes he feels likes he's alone and the only one. He isn't like everyone else and as he is getting older he is realizing that. We carried on the conversation while I was doing IV medications and talked about some other things. I feel like I just have to promise my baby boy he will be okay. Everything will be okay. I know it will. Don't worry Tyler it won't be like this anymore. I know that. I love you okay? I promised him one thing last night. I promised him one day we won't be sick anymore. One day we won't be sick. We won't need lines anymore. We just won't be sick. I love you I said just holding him in my lap hugging him. I didn't even know what to say to him anymore. The last thing I say was. You are so strong, buddy. Just keep fighting. I'm always here if you want to talk about anything and I left his room. I don't know what to say anymore. So much he said last night. Just so much that I wish he could realize. Or understand so it wasn't so hard  but to be honest, I'm not even sure I understand any part of what is going on right now. He keeps my head up high on some of the worst days. We will survive all of this. The entire conversation we had last night will always be a secret kept between the two of us and it will always be one of the most special moments in my life.

but life is just life, you know? whatever happens, happens.

I'm Feeling Eh

I have been feeling really bad this week and trying to keep up with my school work is near impossible. We started daily IV fluids because last week we soon realized I don't have enough fluid in my TPN so I became dehydrated. We are now doing daily boluses of fluids and it is helping to keep my blood pressure stable as well. I'm slowly coming off of one migraine medication and slowly increasing another. IV medications around the clock still waiting to get into Nationwide. I have to go back to doing allergy shots every week because I missed several weeks from being in the hospital. That's really just the update for now because there isn't much we can do anymore. Spirit week is next week at the high school and homecoming is on Friday. I got 98% in Spanish for this 9 weeks! It's amazing because of how much I have seat time missed. In my other two classes, I have a few assignments that need to be made up so they can't input the rest of my grades into the system but hopefully, those grades will be as good as my Spanish grade!

Home

Home... <3

I've been home for a little more than a week now and it's the best thing ever. Not being able to go to school for over a month, not being able to sleep in my own bed at night, being woken up every morning bright and early just for blood draws, vital checks, etc. Adjusting to life at home with a central line is difficult at first but it's starting to get easier. The routine of things is starting to get normal. Hooking up to TPN at 4pm every day so I can be off before school starts. We've added new medications so I have to remember when to take those. Showering with a central line is miserable having to tape it up and seal it three times around just to make sure it doesn't leak. Weekly dressing changes and blood draws. Life is moving on here though it's our new normal and will adjust any way we need to. Having two kids on IV medications, TPN, and all of the other medications medical supplies isn't easy but somehow we are making it work. I see neurology tomorrow and a new doctor on Friday. Depending on how things go with neurology we may throw a GI appointment in the mix for this week. School is going great! I'm having so much fun with my friends in class. I have an insane amount of make-up work and it's so hard to get it all done but I'm trying.

There are definitely a lot of things I'm upset about right now. Until I get this central line out I can't play any sports. meaning no soccer...Soccer was the one thing that made me feel normal. I could play without worrying about anything else. Now I don't have that. I understand that I have to have the central line for nutrition but I wish it wasn't like that. I would be happy if my stomach started working again! Wouldn't that be nice? It just sucks because right now it is the only way to keep me alive and healthy.

Mitochondrial Disease Awareness Week!

Today kicks off the start of Mitochondrial Disease Awareness Week 2013. Just the perfect time to make everyone aware of the awful disease that has robbed children and adults of so much. Did you know every thirty minutes a child is born who will develop mitochondrial disease by age 10? That is 4,000 children each year in the US alone. This makes Mitochondrial Disease just as common as childhood cancer. I could sit here and tell you all these facts about mito but it would mean nothing unless you experience it first hand. You have hardly any energy to even get out of bed every morning. Some kids can't even tell their moms I love you just one time before they are taken away from their mother's arms. No energy to breathe, no energy to eat, no energy to walk, no energy to talk, and sometimes there is just no energy to do anything but lie in bed all day but do anything but sleep. It is the harsh reality for several families trying to cope with this awful disease. Tyler's body doesn't have the energy to walk community distances so most of the time he relies on a wheelchair to go from place to place. He gets his nutrition through his AV fistula since his gut shut down because it could just no longer function anymore. Probably because he just doesn't have the energy to make it work anymore. The fact that 98% of children die before age 20 who are diagnosed with this disease is just horrible. There is no known treatment or even a cure. Every night you just lay in your bed and pray for a miracle. Something that will come along to just fix everything and make it all better again. The body slowly deteriorates and all you can do is watch. There are medications to try and slow the process you take vitamins and supplements. You treat the problems as they arise. That's all you can do. Most kids die because they are even diagnosed just because of a lack of awareness. 90% of children diagnosed before age 5 don't make it to age 13. Girls have a better chance of surviving than boys do. What if this was your child? Would you want them to have those odds? We become so close to other families who have children with mitochondrial disease. You fight alongside them you lose some battles and you win some. Mito you suck! you are awful disease and everyone hates you one day you will be gone because we will find a cure. We are supporting the fighters, adoring the survivors, honoring the taken, and never, ever giving up HOPE because sometimes hope is all we have left.

Invisible Illness Awareness Week

Yesterday was the kick-off of invisible illness awareness week! I wasn't able to post because I had an endoscopy yesterday and I am STILL in the hospital but I decided I feel decent enough to post today. So here it goes! This is my life with an invisible illness. This is my reality.

Have you ever gotten the flu or have been so sick you just feel like you can't even do anything? That's how I feel EVERYDAY. I look like your typical teenage girl. I go to church every Sunday and hang out with the best youth group in the world, I play soccer, I go to school everyday, I love music, and I would probably start a conversation with anyone I meet. Little would you know I have an invisible illness that effects my life on a daily basis. I am constantly in pain, fed through a feeding tube, and spend countless hours in doctors offices and hospitals hooked up to tubes and wires all while trying to keep a brave face and moving on like everything is okay. Looks can be deceiving I don't look sick and that is the beauty of it all! You can't see my insides. If you looked at my body from the inside out you would see a completely different story. The best way to describe it is like picturing World War II in your head just for a few minutes...that is what is going on in my body right now my body is taking a beating except there are no sides it's just one side my body beating itself up. Autoimmune disorders suck!!

I have been through hell and back with these illnesses. You always get those comments "but you don't look sick" people think I'm lying and it's disgusting. It's what people don't see that always gets them. They don't see the countless IVs, blood draws, needle pokes, doctor appointments, hospital stays, holidays in the hospitals, birthdays without cake, surgeries, procedures, medications, treatments, CT scans, and all the other medical stuff/supplies that we have to deal with daily.  Would you like to come live in my world for a day? It's full of pain, nausea vomiting, medication, and a feeding tubes. I don't think you would want to it hurt so much inside and there really isn't much they can do about it.

Being sick so much has brought me up to deal with the pain. I now I have a pretty high pain tolerance and I can go on caring around like everything is all fine with a smile on my face everyday and you have no idea how bad my pain is. Why I don't want you to know because all you would do it pity me because I don't need it I can do anything you can do I just have a few extra things I need to do. Well...I can't eat but you get my point. If there was one thing I wish people would stop saying to those with a chronic illness it would be "stop complaining" or "but it could always be worse." I think I have ever right to complain I'm in pain 24/7 you wouldn't be too happy if you were in pain either. No you complain about how you can't go to school because I have this little cold. All while I push myself to go to school every morning. This last one right here is the one that makes me angry "but it could always be worse." Personally I don't see how things could get any worse. I mean maybe they can but just because someone else is hurting worse than me doesn't mean my problems don't matter because mine do just as much as the next guy. Basically by saying that it could be worse you are saying well what you aren't going through isn't too bad so you will be okay. I am still suffering too and I wish people would see that constant pain that I feel. I'm sorry if someone has it worse off than me but I am still having a hard time too.

Please remember not all disabilities are visible you can't see what I battle on a daily basis you only hear stories. You can't see my insides you are not a medical genius who has everything figured out in this world because if you did then I would be cured and I wouldn't be sick and I would be like worshiping you  right now for curing me. Anyway Happy Invisible Illness Awareness Week! Remember Mitochondrial Disease Awareness Week is next week!!! You must be wearing green!!!!!! :D

Hospital Life

Laying in a hospital bed attached to tubes and wires. I think that's how most people like to spend their Thursday nights right? I got admitted on Tuesday night. First I wasn't able to go back to school on Tuesday morning and we waited for a call back from GI we went for IV fluids and we would just chat with GI. We grabbed labs just to be safe and sure enough, we got a call that night by the on-call gi that I had to be admitted because I was extremely dehydrated and all my other labs were all over the place. Not very good at all. We didn't expect to be admitted till Wednesday.  Finally rehydrated my labs still aren't stable. Feeds are just getting started (it's a Joey pump for all those tube feeders out there you know my pain.) My weight has taken a gigantic drop so no one is happy about that at all. It is gonna take a long time to get back up there again sadly. They are trying to manage my pain finally!! I'm happy about that! It's not going so well but they are at least trying to get my migraine under control. Tomorrow I will have a gastric emptying scan done to see if my stomach functions and empties properly hopefully all will go well. Tyler is coming down to the hospital tomorrow for a visit! Everyone here is just referring me as "Tyler's sister" But I'm stuck here this time, not Tyler sorry. I'm just happy to not be NPO tonight so I can have some ice chips.

One Simple Word

Food. It's a simple word that means so much. To me, food means something that I can't have. It's something I don't think I will ever be able to have unless a cure comes soon. In the dictionary it says food is any substance that sustains your life but food makes me sick it doesn't sustain my life. I have to be deprived of food just to be healthy. That sounds wrong on so many levels but it's true. Food brings horrendous pain and suffering. I'm on a strict no food diet it means I have to have this special formula and I can't have any food at all. I'm fed through a feeding tube in my intestines. Most people can't stick to a diet let alone no food. For a person on a diet trying to lose weight they can cheat here and there and be okay. However, for me that is a different story. Absolutely no cheating. If I cheat I will be on the floor literally screaming because the pain hurts so bad. Cheating brings, pain, sickness, vomiting, extra medicine, and a day or several days in bed. The same thing happens with food fails. If I am doing a food trial and eat a portion of food then I start to have symptoms I've lost the food and I'm in so much pain. I'll never get that food back that I failed. Yes, I will gain some safe foods along the way but I'll also lose some foods and that does not get any easier. You are basically mourning the loss of food. That's the best way to put it. It sounds stupid but what if you were told to stay away from food after you've been trailing that food for six weeks?
Food is everywhere. Our society revolves around food. Just think about it for a minute. Social media, TV shows, commercials, parties, Thanksgiving, Halloween, and even your morning coffee. I understand that most people can however there are those of us who can't. Eat for me to eat all the food you want. Ice cream, cake, pizza, french fries, anything that you want to eat. Eat it without a care in the world. I can't wait till one day when I can do that. So please don't ever take eating food for granted there are me and thousand of others who would do anything to take one bite of food without having to suffer the consequences.

To The Parents of Chronically Ill Kids

Last night was a bad night. Tyler's fistula line had to be pulled and my parents haven't been instructed how to place on yet. My Dad used to be an EMT so he has placed IVs and Mom has been taught how to but it was a crash course until they could do the real training. So my parents poked Tyler three times and were able to access it. They didn't have to go to the ER. Tyler was screaming and he shed a few tears. I thought how hard the had to be on my parents. They had to place an IV on their own child. So this is for the parents of any child who has a chronic illness. Thank you.

To the parents of chronically ill kids:

You guys are superheroes. No one on this earth could do a better job than you do even when you feel like you aren't doing the right thing. I know you feel helpless like you can't do anything. All you can say is "it will be okay" and "it will be over soon" and "everything will be better" and a cure will come." Don't give up. Most people as a parent could never watch their child go through countless medical procedures day in and day out. Countless pills, treatments, hospital stay, doctors visits. All of that just to try and keep them healthy. You watch them hurt, scream in pain, and cry. You know you can't do anything about it but you will always be there for them. You won't give up you want that cure to come now. You could be like my parents and sit there holding their child in their lap crying because they can no longer eat food anymore. You hold them down while a nurse tries to place an IV. Could you mentally even think about putting an IV in your own child? Mix their medications, make tube feeds, draw blood, make IV nutrition. It is scary to think about. Every night you pray for a miracle, a cure, and just for help to make it through the day. You were thrown into this all at once and you are doing the best you can. I know sometimes you don't think it is good enough but you are trying and that's all we can ask for. No parent should ever have to watch their child suffer like this. Sick kid parents go through hell more than anyone should ever in a lifetime.  It's hard I know. I can't lie I watch my parents everyday deal with me and my brother. You are doing the best you can. It's hard but you will make it through this.

Thank you for everything you do. You guys are my heroes!

Beach Mission Trip

I was able to get to enjoy the beach trip! It was an amazing experience. I wasn't feeling very well but I still decided to go. It was nice to forget about life and everything else for a little while. Carefree with some of the greatest friends around. The first night we walked on the beach and shouted out Happy Shark Week. Jesus Loves You! It was awesome to see how many people seemed appreciated that we told them that. Of course, the fact that it being shark week at the beach probably isn't the best thing in the world for some people but we loved it. The next day we went to the Soup Kitchen. Some worked at the soup kitchen and others remolded a building for the counseling center. We had to paint and put down carpeting. After we hung out at the beach for the rest of the day. On Tuesday we went to Cypress Gardens and a water park. We all loved the water park I think it was the highlight of everyone's day. It was a little weird when everyone was staring at my stomach. I know most weren't trying to be mean about it but some people weird and it really bugged me.
That night we went on the ghost tour! We walked around Charleston learning about ghosts. I was super tired. Wednesday we did communion on the beach and went home after touring a few churches. I am happy to be home. My migraines are still there and are really annoying me. We are increasing my amitriptyline to 25mgs this week then 50mgs next week. (you have to slowly increase the dose) I hope it helps. I'm still not tolerating feeds well. Even two ounces in my stomach hurts a lot. I have to try formula tonight so we will see how it goes I guess. I've made the decision to go back to school this year. I'm really nervous but I'm sure I'll be okay. We decided on early dismissal because I'm not sure I would be able to handle a full day of school. That's pretty much it for now. See ya!

Allergies

I have an allergy -- well actually quite a few
It ruins my life
Cuz' I have one too many!

When I eat something I am allergic to
my lips start tingling. I feel quite odd!
My brain is jingling.

My chest is a concrete block.
I struggle to breathe
and wheeze with every breath.

There is a stone in my throat.
I cough and hack and sneeze...
Ah Choo!

I touch my face and get quite a fright.
My face is a puffer fish!
It's all puffy and bright.

My skin is itchy and red.
I have hives all over
from head to toe.

It's odd to know
that when I decide to eat these evil sweet treats,
it hurts very very deep.

I dream of a meal...
A meal with
no questions, no doubt, no worries, nor fear.

Can someone please help me?

Invisible Illnesses

"You can't see it, but I can feel it. You don't understand it, but I deal with it on a daily basis. You either think I'm lazy or you feel sorry for me, but I am stronger than you'll ever know. I fight every day. I don't want your sympathy. I just want to be treated with respect and I want to feel better. I've forgotten what that feels like."

The whole point of an invisible illness is that you can't see it that's the beauty of it all. I look just like you my insides just aren't like yours. Some people think well if you can't see things it isn't real but it is there and it is real. It is kinda like oxygen it is there but people just don't see it. Yet everyone says it is there because it is there. It is the same way with an invisible illness.

We have to fight every day whether it is to get out of bed, participate in normal activities, and push through the pain. It isn't that we are lazy trust me. I want to do everything that you can do in everyday life it is just that sometimes I can't because I'm not feeling well or it hurts too much. We have to be strong and push things aside just so we can function like you every day.

I don't want everyone to feel sorry for me because I am not sorry for myself. I tell people I have a rare disease and the number one reply is "I am sorry." It isn't their fault that I am sick. My Mom and Dad aren't angry. I'm not angry. No one is angry that I have an invisible illness. It just happens and it is not a single person's fault that this happened. Treat me the way you would want to feel if you were me. I am a normal kid. I just have a few extra things that I have to do and carry with me. Like I can't eat food, I have a feeding tube, I carry around an epi-pen and Benadryl everywhere I go in case of an allergic shock. It is those types of things that I have to do that most people don't. I could think of a hundred more things It does make me feel different from everyone else but I don't feel much different. I just don't eat.

I want to feel better! I would trade anything for one day without having to worry about being sick. I could get so much done it wouldn't be funny. I could eat-- Cake, ice cream, pizza, steak, and the list goes on and on.  The first time I got my feeding tube I started feeling normal. I told my Mom wow! This is what a normal person feels like! It's amazing! She just laughed but I was serious. Then I started getting sinus infections and headaches and I haven't gotten better since then. So now I have again forgotten what it is like to be normal. It takes a lot out of you being sick we can't be normal even though we try.

The quote up above. I think I found it online somewhere but there was no author behind the quote so I guess the person is anonymous.

Anyway, I have been doing okay. I'm feeling decent besides my headaches. My stomach has been hurting and I haven't eaten corn in 48 hours so I know it isn't the corn unless it is a delayed reaction. I've been so frustrated lately though. Just upset, worried, and sad about everything. I just want to eat, I want to do this and that and everything else but I can't. I'm okay even though I'm not okay. I just haven't worked all that out yet.

Summer Camp

I went to CCK on Saturday for camp for a week and I had an amazing time with no major medical issues. It was so much fun!! I made some amazing friends that will last a lifetime. Anyway now I am home and resting. I'm exhausted we spent every single waking minute doing something it was tiring. On Wednesday night on of the staff members made me an ICEE that was Michaela Safe. I loved it so much. It makes me happy when people actually care enough to take their time and do things for me. Nothing else to do now that I am home just a lot of time to rest. I feel too tired to do anything so I'll probably sit around on the TV all day catching up on my TV series. No major appointments are coming up. At least I don't think so... My birthday is in 13 days though! AHHH I'm so happy. If I really want to I can take my permit test but I'm not really interested in driving but I'll probably just do it anyway. Anyway, I am so happy to be home.

Loosing a Friend

I never thought one of my friends would die. I mean I know we are all sick but everyone has been doing okay or so I thought. A girl named Alex followed me on Instagram when I first got my feeding tube. I think it was because she also had a tube at the point. I followed back and we talked for a little bit. We continued to follow each other and talked a little more but soon that faded away and I found new people to talk to as well and she just carried on like normal. Alex had been sick in the hospital for about 2 weeks and yesterday in the early morning hours Alex left the world. She told everyone she was doing okay and not to worry about her but she wasn't. She was a great girl an amazing poet. Alex lost her battle with Cystic Fibrosis. Cystic Fibrosis is a lung-digestive disease. She always had a smile on her face no matter what she was going through and most people can't do that. Before you even know her story you would fall in love with her. It's hard to think about how she's gone and maybe we could have talked a little bit more but we didn't and that's okay. One day it could be me or anyone another one of my close friends who passes away because of their illness and it is kind of scary to think that way. Alex passing opened my eyes and some of my friend's lives. We all knew we were okay but are we really. Yes we are sick teens and we are doing okay but that's what we thought about Alex and she wasn't.  Please pray for me, Alex's family, and anyone else who was touched by Alex at one point or another. Her Instagram user name and motto is Every Breath Counts. I'm glad she made every breath count. Now she can breathe freely in Heaven. I'll see you again beautiful angel.

Surgery Has Been Moved

At first, we had surgery scheduled for the 22nd of May but we had to cancel because my End of Course test for English is on the same day!  They did however have a cancellation for May the 15th so we are taking that one. I have to miss a soccer tournament which is kind of upsetting. I was promised that I would be okay and well enough for confirmation 4 days later. Mom says I probably won't feel up to much though. So I'll be there for the service and go home more than likely. Anyway, that's the update for now.

Back To Reality

It's was a great weekend and I was sad to see it to come to an end and we have to go back to reality but everyone does eventually. Friday we drove 6 hours to Kentucky for the retreat weekend at The Center for Courageous Kids. Friday night was introductions, games, and some dinner. The games were really fun and we found some of the people we knew and hung out with them. Saturday we woke up bright and early and did the early morning activity before breakfast  After breakfast, I went swimming while everyone else wanted to go fishing. Kiley caught a huge fish and while I played volleyball with a new friend. Lunch came around and the guy in charge made some noodles for me that I had brought from home so I could eat! During lunch, I also met a boy named Tyler who is my age and has a feeding tube. He was shy but it was still cool to actually meet someone else like me. Soon we did some arts and crafts for the rest of the afternoon. At dinner, they had a snow cone machine with safe flavoring!!!! YAY! It tasted amazing. We had a dance party while the parents went to the bowling alley and talked. I danced with Kendyn and Amelia. Tyler was way too tired and just sat down and watched everyone. Kendyn is an amazing dancer!!! He was so funny to watch. Sunday was the last day and we got to sleep in. I think everyone was a little thrown off by the time change and we got to brunch a little late but oh well. We also went to the camp store to buy t-shirts. I got a shirt that said CCK STRONG. It looks really cool! After that, we went horseback riding. That was cool. There was a boy in a wheelchair and he was even able to ride the horse. I thought that was amazing. Only at this camp would this child would ever be able to ride a horse! We signed the banner and picked up our crafts and it was closing. We took pictures and it was sad to leave. Another six-hour car ride and we are home. Tyler is extremely tired and isn't feeling the greatest. We still aren't really sure about bread. Mom told me to pull it for a while until I feel better and try again. Now it is time to sleep for the next few days! I am exhausted! I hope everyone else is doing good!

Twas The Day Before Surgery...

Twas The Day Before Surgery! How exciting? We have to be at the hospital at 6am! :( So we are leaving the house at 5:15!! So I will be waking up early for an 8am surgery. I went to church this morning and had a great time. Confirmation went well too. Then we went to Rachel's apartment for food!! I am finally able to eat an average meal. Well...as average as plain macaroni noodles can get. NO PAIN AGAIN!!! :D Tomorrow will be the last day with this food trail and I'm really gonna consider it a pass already!!! Anyway, we ate lunch there and left for ice skating. I am a good ice skater if I do say so myself. I skated around with Aksel for the whole time until I got trucked by some old guy! OUCH!! That hurt and I am so glad I decided to disconnect from my tube feeds right before or that tube would have been ripped right out of me! That would have been bad! Then I took it easy for the rest of the time. I went home ate some more noodles. Skype with the most awesome person ever! Christine!! My microphone isn't working so we had an interesting time trying to figure it all out.  Now to finish up feeds for the night and then I am NPO after midnight. I may end up staying up all night since I never get to bed till 3am anyway? Last day with the PEG tube and I am glad to see it go. I hate how the PEG sticks out and all that it is annoying. So glad to get the AMT mini button. A pretty awesome day before surgery if you ask me. I hope it doesn't hurt too bad when I wake up. It shouldn't but you never know. I will be posting about my crazy complex life on this thing you call a blog. :) I hope you enjoy!