Things My Teachers Should Know About Me

Things My Teacher Should Know About Me

By Mattie Lorenzen

Yesterday I realized that my teachers and therapists at school do not know me very well, so I thought that I should make this list of things that you should know about me.

1.   Even though I’m in a wheelchair, I can walk. I use my wheelchair when I get tired, or to keep me from getting tired.

2.   I have a hearing aid called a BAHA. BAHA stands for Bone-anchored Hearing Aid.When I don't have it on I can only hear out of my left ear. When I do have it on I can hear on both sides. Background noise makes it hard for me to hear either way.

3.   I cannot wear headphones.

4.   It bothers me when you make assumptions of things I can’t do because I’m in a wheelchair. You should ask for my input instead of making assumptions.

5.   I do not like being pulled out of the room in the middle of class. I really like school, and I don’t ever want to miss anything.

6.   Because my hand gets tired when I write too much, I like typing better than writing. You will always get better work from me when I have a computer to type on.

7.   If you have a question about me, ask ME! I know myself pretty well! My IEP has a lot of information, too.

It is most frustrating to me when you treat me like I am not capable of doing anything. I am smart and eager to learn. When I’m not at school, I like to read and play the piano. I am capable of many things.  Please take the time to get to know me better!

My Surgery

Yesterday I went to the hospital for my surgery. We had to wake up at 5:00 am so that we could get there at 6:00! That seemed really early to me, since I usually wake up at 9:30! So we got to the hospital, and my mom got me checked in. We waited for a while in the waiting room, and then the nurse called my name. We went back into our room, and I got weighed, my temperature, blood pressure, and pulse were taken, and they measured how tall I was. Then I had to put on the hospital gown that they gave me.

 The nurse came into the room and said we had to do the breathing treatment. I really hate doing it! It doesn't taste, smell, or feel good. I tried to hide my face in the pillow so that it wouldn't get into my face, but my mom made me take my face out of the pillow. I cried because I didn't want to do the treatment, and I didn't want to have a surgery, and I didn't want to be in the hospital at all!

The anesthesiologist came into the room, and talked with my mom about my picc line, putting in an IV, how they would put me to sleep, and stuff like that. When he went out, Dr. Brand, who was going to place my port, came in, he discussed how long the procedure would take, and which side he would put the port on. When he went out, Dr. Herrmann, my ENT, came in. Dr. Herrmann was going to change my ear tunes and my BAHA post.

I can't remember very well, but I think that I woke up before they took me to the recovery room. I fell back to sleep, after a couple of minutes there. When I woke up again, the nurse took me back to Mommy and Daddy. I laid in the bed for a while, but then I realized something: the pain on my chest was not where the port was supposed to be. "Mommy, where is my port?" I asked. She told me that it was on my sternum, which was NOT where we told the doctor to put it! In fact, we told Dr. Brand NOT to put it there! That made Mama really mad. Then she told me that my blood pressure had gotten really low while I was is the OR, so they hooked up my IV. She was walking around the room, and then she walked right past the IV bag. Mommy glanced at it for a second, and then the said, "Wait. Does that bag say 'Lactated Ringers'?" It did! Kids with mitochondrial myopathy aren't supposed to have lactated ringers, because they can be really bad for them. She talked to the anesthesiologist, and found out that they had bolused lactated ringers into me in the OR! She got REALLY mad then!

Right now I'm at home, sitting on the couch, typing up this blog post. I can't get up from the couch without someone helping me, because it hurts too much. I also can't move my left arm around too much, or it hurts. And every once in a while, I get a sharp burst of pain in my left lower back. My mom isn't sure why any of this is happening, because I was only a little bit sore when I got my last port. She thinks maybe it's because of where the port is placed. I think that might be it, too. Mommy says that she doesn't like Dr. Brand anymore, because he put the port where we told him not too. She said that he'll never, ever do another of my surgeries again! She even said, "If you were in the hospital, and you started to lose your leg, and Dr. Brand was the only doctor in the hospital, I'd drive you to another hospital!"

Well, I'm glad that I'm feeling better than I was yesterday, and that my brother and sister are finally coming home from my Nana and Opa's house today! It's been a little boring without them here. I can't wait for Aly to come and talk with me and hug me, and for James to play with me. I'm even missing James annoying me!

I hope that you all have a great weekend! Thank you so much for all of the prayers and love you've been sending! I am so glad to have friends, classmates, and church members like you guys! You're awesome!!!!!

Mattie

My Poem

Hey guys! I wrote this poem for my Language Arts class, and I thought maybe you'd like to read it! It's a story that I made up about Gabby Douglas. I hope you like it!

Her heart was pounding as fast as a car can race,

She was shaking, and there were beads of sweat on Gabby’s face.

It was her turn to perform on the Olympic uneven bars,

People stared at Gabby like she was an alien from Mars!

She jumped up, grabbed on, started to swing,

Then her hand slipped, rubbed on the bar, and started to sting

She seemed as graceful as a small cat

Until she lost her grip and tumbled to the mat

The light reflected off of her shiny leotard,

While she fell and landed on her back, hard.

Some people laughed at poor Gabby’s mistake,

But she stood firm, solid, Gabby did not quake or shake

Gabby wasn’t at all nervous when she began to swing again,

She twisted, she turned, and she was as fast and graceful as the wind.

Gabby jumped, she twirled, and she spun upon the bars,

The gashes of mistake turned into healing scars.

“You were beautiful! Brilliant!” Gabby was told

She was so surprised and happy when awarded with the gold!

So don’t be afraid to take a second chance,

If you mess up, be like Gabby, and twist and twirl and dance!

Sorry I haven't posted anything for so long!!!

I am a little nervous because I am having surgery on September 14th. I'm going to get a new port (and I'm glad that it'll be bigger--the last one they put in was the smallest one they make!), and I'm getting new ear tubes for both ears. I am also getting my BAHA post changed to a longer one (the one I have right now is too short, and skin is growing over it). I've had two operations done at the same time, but I've  never had three in one! My mom says the BAHA post doesn't count as a surgery, because it is really easy and they could've done it in the doctor's office, but I'm still nervous about it!

I'm really really really really really really REALLY excited! We're getting a new chihuahua! His name is Petitas, which means small, and he is only 6 months old!!!!! Mama says we're oing to change his name...and my dad and I want to name him Mr. Quivers! That's what we wanted to name Paco, because he shakes all of the time, but no one else wanted to name Paco Mr. Quivers. My dad is going to bring Petitas home tonight so that we can meet him. He really is small, and he is black all over. I can't wait to see him!!!!!! : )   : )   : )  He is SO CUTE in the pictures!!!!!!!!!!!!!

Mattie

Parties and Doctors

Yesterday, my whole family went to my friend Annabella's birthday party. She turned 9. Her party was at the Hot Wheels skating rink. Almost every skating song they played was one I knew. They had pizza, cake, cupcakes, chips, and ice cream. It was a really fun party, and I enjoyed seeing Annabella again. The party was really fun.

Today I went to the ENT. The doctor said that my ear is still infected, so I have to wear ear plugs whenever I get in water. I even have to wear plugs when I'm in the shower! Dr. Hermann also said that I'm going to need new ear tubes because my ear is still infected. I am nervous about getting new tubes because it means my 16th operation. Even though I don't want the surgery, I also want to get rid of the infection. I really hope the operation goes okay!!!!!!

I"M GOING TO CAMP!!!!

I AM SO EXCITED!!!! My mom got my MDA Summer Camp packet in the mail today! Mama will drop me off at Camp Rock 'N' Roll on July 1st, and pick me up and the 6th. On Sunday, the first day of camp, some bikers will come and do the camp activities with us. On Monday, we will have a luau with music, games, and swimming. On Tuesday the theme will be Los Vegas and we will have and talent show.  I will either play a song on the piano or sing for the talent show, because I enjoy and am good at both. Wednesday's theme will be America! They will have food, a band playing music, and then a video to celebrate our country. Texas will be Thursday's theme.

I can't wait to go to Camp Rock 'N' Roll! I am soooooo excited. There are exactly 15 days until camp starts. I'll write another post for you guys either right before camp or right after. Bye!!!!

Bad Day

I have not had a very good day today, have you guys? This morning my mom accessed my port, and that did not go very well. I got very upset because I was scared, and I even cried and hyperventilated! I was scared because last time my mom tried to access my port, she missed the port and it hurt really badly. This morning, though, she got it on the first try. It hurt, even though I had put on my numbing cream, but only a little. My dad texted my mom to ask how the accessing went, and I told her to tell Daddy that she missed twice before she got it. He actually believed her, and Mama had to send another text to tell him that she was teasing.

Lately I have not been wanting to eat that much, and this morning I got mad when my mom and Ms. Edie, my nurse, told me that I had to eat breakfast even though I wasn't hungry. I got upset because I wasn't hungry and didn't know what I wanted to eat. Mommy kept suggesting things, and finally I decided to have some hot chocolate. Mama made it for me, and it was really good, even though I wasn't hungry.

After getting really upset about my mom accessing my port, and then doing physical therapy, I am pretty tired. I am glad that tomorrow will be a new day, and I hope that tomorrow is better than today was. I hope you guys have a good day. Bye!

A Memo From Mattie

HI, GUYS!!! I'm so glad that it is summer vacation now because I don't have to do anymore school! I like learning, but sometimes it's nice to take a break. I did pretty good on the CRCT (Criterion-Referenced Competency Test). I exceeded in all subjects! The subject that I got the highest score in was reading. In the sixth-grade reading, you must get over 850 points to exceed, and I got 893 points! I was really proud of myself.

This week, I've been a little tired. Yesterday, when I woke up I just went upstairs, said good morning, and laid down on the couch with a pillow and blanket! Today, I feel a little better, but I am hot from going outside to play basketball with my brother. My temp went all the way up to 100.3 degrees! My mom said that my face was the color of a fire engine.


Yesterday I went to see my ENT. ENT stands for Ear, Nose, and Throat. I had to go there because I have a really bad ear infection in my right ear. It's been there for a couple of weeks, and it won't go away. When we were at the doctor's office yesterday, a doctor named Dr. Ellen had to suction out my ear. She put something that looked like a straw in my ear, and it sucked out the goop in my ear. It felt weird, and one time it hurt a lot. I was glad when they were done. We have tried ear drops for my infection, but they aren't working, so I might need to take an oral medicine. The good news about that is that I don't mind taking pills, and if the medicine is a liquid, my mom can put it through my G-Tube so I won't have to taste it. Another reason I had to go to see the ENT was because I have thrush. It does not hurt or anything like that, but it won't go away, just like my ear infection.


At 2:00 pm today, my nurse Ms. Suzie is coming. Ms. Suzie's real name is Marie-Suzette, but we call her Suzie for short. I really like Ms. Suzie because she is funny, she likes the same music that I do, and we paint our nails together. Ms. Suzie braids my hair every time that she comes; sometimes with one or two large braids, sometimes with a whole bunch of small ones. My PT (PT stands for physical therapist) Ms. Leigh, is also coming at 2:00. She has me working on my hamstring stretches and yoga. I don't like stretching, but I love yoga. My favorite poses are the tree pose, the warrior pose, and the triangle pose. Some people think that yoga is boring, but I think that it is fun.


I've been trying to practice my piano a bit more recently. My Top Three Songs are :


1. House of the Rising Sun


2. Fur Elise


3. The Piano-Playing Chocolate Eater's Blues (this last one is really cool. Maybe I'll take a video of it for you sometime!)


I practice these songs more than any of the others. Even though I have a piano in my room that my grandmother gave me, I usually practice on my keyboard. This is because the piano not tuned, so some of my songs sound weird.


Another one of my hobbies is reading. I can read almost anything! My CRCT test results show that I have a high school or college reading level. My favorite types of books are Sci-Fi, Fantasy, and Historical books. Even though I like these best, I also enjoy reading things like "The Book of Useless Information" and "Words You Should Know to Sound Smart." Sometimes I read dictionaries for fun.


Well, I hope that you guys enjoy reading this post and that you have a wonderful day! Bye!!!

Tornado

Hey, guys! Last night, there was a tornado warning/watch. There were a lot of tornado sirens going off, and my brother James and I had to try to sleep under the stairs for a couple of hours. (Aly wasn't there for most of it because she was at her friend's birthday party.) James and I couldn't sleep because we were scared, the TV was on, and we were uncomfortable. At 10:30, we were finally allowed to go back to bed. James had to get a sleeping bag and sleep in my room, because my room is downstairs. What's funny, though, is that that I went to bed late and got up at my regular wake-up time, and I don't feel that tired!

I hope that you guys (and your houses) are okay! :)

Mattie

Port Surgery

Hi, guys! I'm not sure if my mom already told you this, but since I have a bunch of I.V.s the last couple of months, I am getting a port. The surgery is going to be on March 16th. I'm a little nervous...but I'm excited, too. I'm excited because I won't have to get stuck in the arm with a needle anymore. We've already gone to the doctor/surgeon, Dr. Kim, and he told us about it, answered our questions, and he even showed me what a port looks like! My mom also told me that when I get a port, we can get a port for my baby doll. So, my doll will have glasses, a feeding tube, a port, a wheelchair, a backpack, and a hearing aid! She'll look just like me!
Well, I guess that's all. I thought you guys would just like to know about the surgery.

Mattie

Nursing

Hey, guys! I'm really excited-and I've been excited all day! I'm excited because my nurses came out, and they started helping us with my medical stuff. I'm having an exciting day, but it's also been a long day. I'm pretty tired right now...but I still feel good! Isn't it weird that I feel good and tired at the same time?


My nurses are really nice, and I really like them, even though I just met them today. I have three nurses, and their names are LaBrenda, Suzie, and Edie. Tomorrow I will have LaBrenda, Wednesday I will have Edie, and on Thursday I will have Suzie. I'm not sure who I will have an Friday.


I know this is kind of off subject, but today I started my new school! I did my first two lessons (both were math) and got 100% on both! The only thing I don't like about my school is the Orientation. :) It take over an hour, and I'm still working on it even though I started it this afternoon. Well, I just thought I'd update you real quick, but now I've got to go eat dinner...Bye!

Three Exciting Things I Want To Share

Hey, guys! We're kinda busy today, but I thought that I would write about three things that happened today. The first one is that I am switching schools!! Instead of going to GCA (Georgia Cyber Academy), I'm going to go to GACA (Georgia Connections Academy). My brother James already goes to GACA, but my sister is going to stay in GCA until next year. Next year, she'll go to a high school called Gwinnett School of Mathematics, Science, and Technology.

 The second thing that happened was that I got some business cards in the mail that my mom ordered! They have my name, my Caring Bridge site, and the web address for this blog! Now I  can give them to people so that they can get to know me better, and see my medical updates.

The last thing is that I got a new brace. It is pretty exciting, but definitely not as exciting as switching schools or getting business cards....The brace wraps around my waist and helps my posture by making sure that I am sitting up straight. I am supposed to wear it for at least one hour every day.

Well, I thought that you guys would like to hear about these things. I hope you all have a great weekend!!! :)

Mattie