Hi, everybody!
I haven't been having a very good week...I am getting tired a lot, and I have an I.V. I had to get stuck with a needle 3 times, too. The first time, it was my I.V. but it didn't really help. The second time, it started dripping everywhere. The third time, I got another I.V. which is still in my arm. It should be done soon, though. I have been so tired, I had to skip going to physical therapy twice. Today I'm feeling better...not as tired as I was. Mommy said that I'm starting to look a little gray, which worries me, because last time I turned gray, I crashed and was REALLY tired. That was why I had to get my I.V. I'm hoping it will be okay, and I'm trying to focus on this: I'm so excited, because in a few days, my family and I will be going to Disney World! On Saturday, we had a party to celebrate me being able to go with Make-A-Wish. I went out with my mom and got a new outfit, and we bought a lot of decorations and party favors. Ms. Joelma made my cake, which was shaped like a castle. It was orange, which is my favorite color! It had little toy fairies on it(Tinker Bell, Fawn, Rosetta, Silvermist, and Iridessa) stuck all over it. It was so pretty! I invited some close friends, and a lot of my family members. My Nana and Opa brought a game called The Plunger Game, and everyone enjoyed playing it, even the adults! I am REALLY excited about the actual Disney part. I really want to go on Space Mountain, Soarin', the Haunted Mansion, the Mad Tea Party ride, and It's A Small World. They all look like lots of fun!!! Well, I will write another post either when we get there, or when we get back. Bye!!!
Mattie
Thursday, October 20, 2011
Monday, October 3, 2011
FOCUS
Hey, everybody, this weekend my whole family and I went to a FOCUS event at Camp Twin Lakes Will-O-Way. FOCUS stands for Families Of Children Under Stress. We were camping from Saturday morning till Sunday afternoon. Each family would share a little cabin with three other families. We got a cabin with Mrs. Amanda's family, and another family that we never saw. We woke up at 7:30 am on Saturday, and drove for about an hour. It was a little after nine when we got there. When the workers were getting us checked in, they handed us a bag with our schedule, T-shirts, and name tags. After we got unpacked, we went out to see what we could do.
It was a couple hours until our first event, which was archery, so we went out on boats that you had to pedal so that they would move. After the boats, we went fishing, and then headed off to archery. We had a blast, shooting arrows at targets. James even hit an apple off the top of a target. He was the only one who was able to get it!
After we finished archery, we went to the Arts and Crafts Cabin. Because the theme was Super Heroes, they had capes and masks you could decorate. They also let you design a picture frame for the family picture they give you. I drew little hearts and stars on my cape, and put stars on my yellow mask. Alyssa, James, and I all did the picture frame together. Then, I went on a peddle boat with Mrs. Amanda, Layton, and Mr. Karl.
At 12:00 pm, we went for lunch at the Dining Hall. Before they opened the lunch line, they played a little bit of BINGO. Then they said the blessing and opened the line. They had fruit, quesadillas, and PB&J sandwiches. For dessert, they had brownies. When everyone was done eating, they had Spirit Time. Spirit Time was where they played music and you got to sing and dance. I tried to learn all of the dances!
After lunch, we went to the gym. They had super heroes there: Bat Man, Wonder Woman, the Green Lantern, and Captain America. The super heroes gave you their autograph, and even took a picture with you! When the super heroes left, the kids ran around. Then, we played dodge ball. Aly and I were on a team with a boy we didn't know, and James and Layton were on the other team. By the time we finished playing, it was time for dinner.
Instead of eating at the Dining Hall, we ate by the pool. They played BINGO, and Mrs. Amanda won a round! For dinner, they had hamburgers, french fries, and watermelon. They also had veggie burgers for if you were a vegetarian, like James. After dinner, we played volleyball. Then, we went and had s'mores. Finally, it was time for the hay ride. It was really fun, but very cold. James and I thought it was weird that the ride didn't have any hay!!!
The next morning, we had to wake up at 7:00 so we could be ready for breakfast at 8:00. I had taken a shower the night before, so all I had to do was get dressed and bu\rush my teeth. Then I read my book My Sister's Keeper until it was time to go. We went to breakfast which was eggs, toast, cereal, and bacon. Then they had Spirit Time again, and I knew all of the moves! We had to leave right after breakfast so that we could make it to our next event, the Climbing Tower.
The Climbing Tower was a really high rock wall. Each one of us(except for my parents, who didn't go on at all) went on the tower twice. Both Aly and James only made it half-way the first time, but the second time they both made it all the way. I made it half-way both times. It was really cool watching other people do it, because some of the kids couldn't even walk. There was one boy who couldn't walk, and they put him in a little sling so that they could pull him up. He had never done anything like that before, and he had the biggest smile on his face.
We walked around for awhile, and then went into the Dining Hall to play Bingo, and then eat lunch. I was so excited when I won Bingo!! I went up to the prize box, and finally chose a Littlest Pet Shop coloring book. Katy won the next round, and chose a packet of tattoos. She gave me and James four each. After lunch, we had Spirit Time again. While I was dancing, a lady with a camera kept taking pictures of me dancing to some of the songs. I was super excited when she came over and told me that she worked for the newspaper. She asked my mom if it was okay to use my picture in the newspaper, and Mommy said yes! The reporter said she would send us a copy of the newspaper with my picture in it. We haven't gotten that yet.
After we finished talking to the reporter, someone brought out a craft. The craft was where you take a small strip of leather, and you can take metal stamps and stamp your name into the leather. I made a bracelet that said Mattie L. We then went outside to do our last activity: remote control race cars. I got the red car, and raced against my brother, who had the silver car. Then I gave my remote to someone else, and so did James. That way, everyone got a turn.
That weekend at camp was one of the best ones in my life. It was nice to see that there were others like me out there. While at camp, I met a few people that had Mitochondrial Myopathy, many people in wheelchairs, and a couple who had hearing aids. You know what? I can't wait 'till they do the camp again next year!!!
It was a couple hours until our first event, which was archery, so we went out on boats that you had to pedal so that they would move. After the boats, we went fishing, and then headed off to archery. We had a blast, shooting arrows at targets. James even hit an apple off the top of a target. He was the only one who was able to get it!
After we finished archery, we went to the Arts and Crafts Cabin. Because the theme was Super Heroes, they had capes and masks you could decorate. They also let you design a picture frame for the family picture they give you. I drew little hearts and stars on my cape, and put stars on my yellow mask. Alyssa, James, and I all did the picture frame together. Then, I went on a peddle boat with Mrs. Amanda, Layton, and Mr. Karl.
At 12:00 pm, we went for lunch at the Dining Hall. Before they opened the lunch line, they played a little bit of BINGO. Then they said the blessing and opened the line. They had fruit, quesadillas, and PB&J sandwiches. For dessert, they had brownies. When everyone was done eating, they had Spirit Time. Spirit Time was where they played music and you got to sing and dance. I tried to learn all of the dances!
Instead of eating at the Dining Hall, we ate by the pool. They played BINGO, and Mrs. Amanda won a round! For dinner, they had hamburgers, french fries, and watermelon. They also had veggie burgers for if you were a vegetarian, like James. After dinner, we played volleyball. Then, we went and had s'mores. Finally, it was time for the hay ride. It was really fun, but very cold. James and I thought it was weird that the ride didn't have any hay!!!
The next morning, we had to wake up at 7:00 so we could be ready for breakfast at 8:00. I had taken a shower the night before, so all I had to do was get dressed and bu\rush my teeth. Then I read my book My Sister's Keeper until it was time to go. We went to breakfast which was eggs, toast, cereal, and bacon. Then they had Spirit Time again, and I knew all of the moves! We had to leave right after breakfast so that we could make it to our next event, the Climbing Tower.
The Climbing Tower was a really high rock wall. Each one of us(except for my parents, who didn't go on at all) went on the tower twice. Both Aly and James only made it half-way the first time, but the second time they both made it all the way. I made it half-way both times. It was really cool watching other people do it, because some of the kids couldn't even walk. There was one boy who couldn't walk, and they put him in a little sling so that they could pull him up. He had never done anything like that before, and he had the biggest smile on his face.
We walked around for awhile, and then went into the Dining Hall to play Bingo, and then eat lunch. I was so excited when I won Bingo!! I went up to the prize box, and finally chose a Littlest Pet Shop coloring book. Katy won the next round, and chose a packet of tattoos. She gave me and James four each. After lunch, we had Spirit Time again. While I was dancing, a lady with a camera kept taking pictures of me dancing to some of the songs. I was super excited when she came over and told me that she worked for the newspaper. She asked my mom if it was okay to use my picture in the newspaper, and Mommy said yes! The reporter said she would send us a copy of the newspaper with my picture in it. We haven't gotten that yet.
After we finished talking to the reporter, someone brought out a craft. The craft was where you take a small strip of leather, and you can take metal stamps and stamp your name into the leather. I made a bracelet that said Mattie L. We then went outside to do our last activity: remote control race cars. I got the red car, and raced against my brother, who had the silver car. Then I gave my remote to someone else, and so did James. That way, everyone got a turn.
That weekend at camp was one of the best ones in my life. It was nice to see that there were others like me out there. While at camp, I met a few people that had Mitochondrial Myopathy, many people in wheelchairs, and a couple who had hearing aids. You know what? I can't wait 'till they do the camp again next year!!!
Monday, September 19, 2011
Mito Week!!
Hi, everybody! I'm not sure if you know this, but this week is Mitochondrial Myopathy Awareness Week. Some of you might not know what Mito is, so I'll tell you. Mitochondrial Myopathy is a disease that makes your Mitochondria stop working. Mitochondria are organelles in your cells that give you energy. When they stop working, you get tired and don't feel well because you don't have all the energy your body needs. If you have Mitochondrial Myopathy, you are very likely to develop speech and hearing issues. You can also get Disautonomia, which is when your body cannot regulate your temperature and you can get very hot or cold.
With Mito, you need a lot of different medical equipment. I have a wheelchair, leg braces, orthotics for my ankle, my BAHA (Bone Anchored Hearing Aid), and a feeding tube. With or without Mito, you might need a feeding tube, a wheelchair, a BAHA. But most of the time, it's with Mito that you need all of them.
Sometimes when my Mito gets really bad, I get upset. I feel bad not just physically, but emotionally too. I get mad, sad, and sometimes I scream and cry. Most people have something different about themselves that they don't like, but a lot of people don't know what it feels like to have someone staring at you because you have a wheelchair or a feeding tube. So many times people ask me, "Why are you in a wheelchair? Did you break your leg or something?" and when I reply that I have Mito and I was too tired to walk, they stare and don't look away until I go somewhere else. Most people don't know what it feels like to have people ask, "What's wrong with your leg, why are you in a wheelchair? What's wrong with your neck? Why do you have those things in your shoes?" I feel that some people have all the luck, and I have none. I get SUPER mad, and I want to yell at God, and ask him why he gave this to me. I will never know, but I'm always hoping that one morning I will wake up, and I'll know why he gave me all this. That would make life so much easier.
Mitochondrial Myopathy isn't like a regular disease. It's for life, and you can't make it go away, no matter how hard you try. Mitochondrial Myopathy isn't an easy disease to live with. So let's spread awareness for Mito, because most people don't even know it exists. Every year, go on the Walk For Mitochondrial Myopathy. Donate money to the United Mitochondrial Disease Foundation (UMDF) People think leukemia and other cancers and diseases need to have more people know about about it, that those diseases are worthy enough for people to know about them. Well, if you have Mito or know someone who has it, you will probably agree with me when I say Mitochondrial Myopathy needs to have more people to know about it. Together, spreading awareness, we can help find a cure.
With Mito, you need a lot of different medical equipment. I have a wheelchair, leg braces, orthotics for my ankle, my BAHA (Bone Anchored Hearing Aid), and a feeding tube. With or without Mito, you might need a feeding tube, a wheelchair, a BAHA. But most of the time, it's with Mito that you need all of them.
Sometimes when my Mito gets really bad, I get upset. I feel bad not just physically, but emotionally too. I get mad, sad, and sometimes I scream and cry. Most people have something different about themselves that they don't like, but a lot of people don't know what it feels like to have someone staring at you because you have a wheelchair or a feeding tube. So many times people ask me, "Why are you in a wheelchair? Did you break your leg or something?" and when I reply that I have Mito and I was too tired to walk, they stare and don't look away until I go somewhere else. Most people don't know what it feels like to have people ask, "What's wrong with your leg, why are you in a wheelchair? What's wrong with your neck? Why do you have those things in your shoes?" I feel that some people have all the luck, and I have none. I get SUPER mad, and I want to yell at God, and ask him why he gave this to me. I will never know, but I'm always hoping that one morning I will wake up, and I'll know why he gave me all this. That would make life so much easier.
Mitochondrial Myopathy isn't like a regular disease. It's for life, and you can't make it go away, no matter how hard you try. Mitochondrial Myopathy isn't an easy disease to live with. So let's spread awareness for Mito, because most people don't even know it exists. Every year, go on the Walk For Mitochondrial Myopathy. Donate money to the United Mitochondrial Disease Foundation (UMDF) People think leukemia and other cancers and diseases need to have more people know about about it, that those diseases are worthy enough for people to know about them. Well, if you have Mito or know someone who has it, you will probably agree with me when I say Mitochondrial Myopathy needs to have more people to know about it. Together, spreading awareness, we can help find a cure.
Monday, July 11, 2011
Orthotics
Hi, everybody! Today we went to ProCare Orthotics so I could get my orthotics looked at. The lady who saw me said they looked okay, but she had to sew a little bit of velcro onto my straps because they were starting to frizz. They looked a whole lot better when she did! She also looked at my ankles to see if the orthotics were rubbing against them, but there were no signs of redness anywhere. YAY!!!
:)
Mattie
:)
Mattie
Friday, July 8, 2011
Coming home!
Hi,everybody! I am at the airport with my mom, and we
are getting ready to fly back to Atlanta!!! Wait...I forgot to tell you, we flew to Cleveland, Ohio, on Wednesday! We came to see the Chelimskys at the dysautonomia clinic. They want me to start two new medicines and some new therapies. The new medicines were the only bad thing about the trip. When they told me I needed more medicine, the first thing I said to them was "Boo..." We were at the doctors for about 4 hours. We stayed at the Glidden House, which is a fancy hotel. I am so excited to be going home!!!!!!!!!
Thursday, June 30, 2011
I'm Getting A New BAHA!!!!
New Bike
Mattie
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