Monday, December 19, 2011

Edit on Early Post: My Adapter Cord!!!!

Hey, everybody! Tonight at dinner, my mom and I realized that there was something good about my day: Earlier today, I went to see my ENT (Ear, Nose, and Throat), Dr. Herrmann. His audiologist gave me this cord that I can plug into my BAHA (Bone Anchored Hearing Aid) and the other end plugs into my iPod. Then, my BAHA acts like a set of earphones and I can hear the music! It's pretty cool, because I don't have to wear regular headphones. I can't wear regular ones because I'm deaf in one ear. The cord is called an adapter cord. It definitely helps, because I can hear my iPod and still hear everyone and everything else. I guess the cord gave me this good part of my day!!!!

-Mattie L.
Hey, everybody. I've been having a pretty bad day...Yesterday, I started to feel bad, and so I got an I.V. (It took the nurse two sticks and lots of fishing around to get it in.) I'd already been having a bad week. So, today I had my I.V. in and I was starting to feel better, until this afternoon. I got tired and hot, and didn't really want to do anything but sit around. One of my mom's friends suggested that we check my blood sugars, and we did and got the number 161, which is really high. (Did you know that you check your blood sugar level by getting your finger stuck with a needle?) A girl my age, who is getting D-5 through an I.V., should have under 120. So, my mom told her friend what my blood sugar was, and her friend told her to call the doctor because that was very high. My mom called the doctors' office, and they told her that we needed to check it again to make sure that it was correct. They said it was actually a diabetic number! So, about 45 minutes after we did it the first time, we checked it and got 123. 123 is high, but not as high as 161.

Now, Dr. Vidya, my pediatrician, is going to have us check my blood sugars before each meal, 1 hour after each meal, and then 2 hours after that. I hate having my blood sugars checked, because the needle hurts even though my mom says it isn't supposed to. We've run out of the test strips you use to check it, so my mom is going to have my dad go buy some more. I was happy when we ran out, because you can't check your blood sugars without the strips, but we'll have more soon.

The doctor says that if my blood sugar stays high, then I'll have to be taken off of my I.V., because it is D-5, which is mostly sugar. The thing that I'm scared of is that with the D-5, it makes my blood sugar high, but without it I won't get all of the fluids I need. Which one is worse? I really don't know right now.

I'm hot and tired. The thing I don't like about Mito is that it makes me tired, but not sleepy. If I'm tired, I want to fall asleep, but if I'm not sleepy, then I can't fall asleep. Right now, I'm wishing that someone will come up with a cure, one medicine, that cures Klippel Feil, Mitochondrial Myopathy, and Dysautonomia all at once. In case you didn't know, Klippel Feil, Mitochondrial Myopathy, and Dysautonomia are my main diseases. Mitochondrial Myopathy and Klippel Feil actually cause most of my other things.

I should probably get off the computer now...I think I'll go crochet or watch TV or something that I can do sitting or laying down. I'll write another post if we find something out from the doctor. Bye!

Sunday, December 4, 2011

Breakfast With Santa

Hey, everyone! I thought you guys would think it was cool to hear about where we went yesterday, why, and who I met. The UMDF (United Mitochondrial Disease Foundation) hosted a Christmas party in a hotel near Atlanta. The party started at 9:30, and since we live about an hour away from there, we were supposed to get up early. We had a crazy time getting ready, though, because something went wrong with the alarm clock and we didn't wake up when we were supposed to. We had to shower, blow dry our hair, get dressed, and leave in just fifteen minutes! We actually made it there right on time (which was a miracle). 

The first thing we noticed when we got there was a big table with a bunch of toys and presents on it. After we looked around, we went to get some breakfast. They had eggs, biscuits and gravy, bacon, sausage, and some danishes. It was delicious! After we ate, we walked over to the table, where we were told that each kid could pick out one present. T. J. Max donated all of the presents. I got a box full of magic tricks, James got table-top soccer, and Aly got a jewelry box that opened on the top, front, and back. All of the presents were awesome! After each kid chose a present, the T. J. Max volunteers stood up, made an announcement, and handed the person from the UMDF a gigantic donation!

When we were done with picking out presents, we went and saw Santa Claus. Aly, James, and I each got a picture with him. He asked us what we wanted for Christmas, and he told us that maybe we would get the thing we wanted if we were good.

I walked around, looking to see if there was someone that I knew. I saw Dr. Kendall and her husband, Mr. Mike, and I found my friends Penelope, Hannah, Ruby, Lily, and Annabelle. We talked and had a really good time! It felt kind of good to be around kids my age who also have Mito. There was one girl named Emily, who had Mito, who invited me to join her group called TNT DynaMito.

It was almost time to leave, so I was walking around saying goodbye to my friends. Try to guess who I saw! Actually, you guys will probably not be able to guess it, so I'll tell you: I saw Miss Georgia! Miss Georgia from the pageant, who would go on next to compete for Miss America. It was so cool, and she was really nice and funny when I talked to her and asked her if she would take a picture with me. Here is that picture!

While we were driving home, my Nana called my mom and asked if we wanted to come over to her house. My mom said yes, so we went and picked up Panda Express for lunch and drove to Nana's house. Nana lives there with GG (Great Grandmother) and Opa (German for Grandpa). We sat down and started eating after we all said hello. Right in the middle of lunch, my cousin Mackenzie called and asked if she could come over, and we all said yes. Nana and Aly got in the car and drove to Mackenzie's house, and by the time they got back we had all finished eating. Nana finished her lunch, and then all of the adults started talking while James, Mackenzie, and Aly played MarioKart and I practiced my new magic tricks. When I was confident I knew them well, I actually put on a magic show for everyone! (No, I will not tell you how they work. Try to figure them out yourself!) After the show, we cleaned everything up and went home. It was probably one of the best days of my life!!!!