Update: Freshman Year September 2016 / 14 yrs. old

Hi friends and family! Just a quick update on Kyla Ann and her journey with CMS. She is a freshman now and I am super proud of the young lady she is becoming. She loves to read, participate in theatre, choir and her youth group. Her transition to high school has been positive and her teachers are awesome!  She is able to talk about CMS and MDA and give her own outlook on the disease and how it effects her body. She is still taking Mestinon 4 times daily and fatigues by mid day. She has overall muscle weakness that appears in her eye muscles frequently. She also has trouble with her right foot/leg being more weak that the other leg. She sometimes seems to drag that foot. Here is what she wrote last year in preparation for MDA muscle walk about her journey: 

I'm not ordinary. I like clothes, books, TV, Dr. Pepper, hanging out with my family, and sleeping. I go to junior high and I make A's. I'm in mostly AP classes and varsity choir. I have brown hair, brown eyes, and lots of freckles. But I'm anything but ordinary.

I have Congenital Myasthenic Syndrome. You're probably thinking, "Well okay, sure, but what is that?" CMS is a form of Muscular Dystrophy. What that means is my muscles don't work properly. I sometimes get really tired and I have to take medicine every day. CMS is not a contagious disease, and there is no cure. Not yet, anyway.

Just because I have a muscular disease doesn't mean I'm dumb. The brain is an organ, not a muscle. Everything else in me works fine but my muscles are messed up. Weird, huh? But this is the way I work: The brain sends messages to the nerves and the nerves pass it to the muscles who perform the duty. In my case my muscles are slow performers. I function fine as long as I take my medicine four times daily. If I don’t, I become tired and sick. When I was really little it seemed like I practically lived at the hospital because nobody knew what was going on with me. I got medicine, eventually, and taking it has become a part of my life. Remembering when to take it however… is a different story.

It doesn’t really bother me. It never has. CMS is just part of who I am. It even has some perks. Take my doctors for example. I go to Ft. Worth for a checkup twice a year at Cook Children’s. My doctors are super funny and I think they genuinely care about each child. But the best part is... Camp John Marc. Camp John Marc is a place where kids with all kinds of complications (from cancer to muscular disease) can meet and hang out for a week. Kids in wheelchairs can zipline, ride horses, go swimming, and do everything kids without chairs can do. I attend the Muscular Dystrophy Association’s Camp for kids with Muscular Dystrophy each year at the Camp John Marc facility. Each year I make a new friend and walk away with half a dozen hilarious stories that will make you fall on the floor laughing. My favorite part about camp is meeting people who have a lot of the experiences I had growing up. I love hanging out with them.

In short, I don’t use a wheelchair. I do my homework. I eat pizza. I read books. I sing. I laugh. I smile.
But I’m not normal or ordinary. What is normal?

Kyla Ann Carter
age 13
September 10, 2015

We are selling t-shirts this year to raise money for MDA Muscle Walk. Here is the info:

Love you all!

Thanks for your amazing support through the years!

Sabrina, Neely, Kyla and Laura

One Week Away!!!

One week away from Muscle Walk 2014!!!  Donate here to support our kiddos and all the awesome opportunities and research MDA is doing to help kids with Muscular Dystrophy!!!!

 

http://www2.mda.org/goto/teamkyla1

 

Camp is a super special thing in Ky's life that MDA makes possible!!

 

 

 

MUSCLE WALK 2014 TEAM KYLA

Hi friends!! Just a quick update to the CMS Blog!  Kyla is doing well and we are soon to participate in our 2nd MDA Muscle Walk. Here is the link to join our team and donate!!

http://www.musclewalkmda.org/dfw

Here is a recent picture of Kyla Ann. She is a 7th grader and doing well. She still has muscle and joint pain after long days, trouble with eye muscles and alignment, and her gross motor skills are slightly delayed.

She enjoys reading, collecting rocks/exploring, swimming, biking, and hanging with friends. She likes all things turquoise and lime green with a little zebra print thrown in. :)

Ky's 12th birthday morning picture

She had a great summer and is always surrounded by her family near and far who love her so!!!

Kyla's City (School)

Kyla told us this week that her school is like a city.  So, she is going to start telling that story.  Here's the first part of the story.  I will be typing exactly what she tells me to type.  Here goes!

The cafeteria is the restaurant.  The nurses office is the like the hospital.  The library is like a public library.  The classrooms are work places.  The teachers are the bosses. The principal is like the mayor.  All of the school and all the workers in it reminds me how a city is supposed to work.  Our school does a system called TRUST cards.  I like to think of it as my license.  You are allowed to do things in the city if you have it.  The teachers are allowed to take it away if you are not cooperating or not doing your work. 

Often when I'm walking along the hallway, I pretend that I'm walking along the streets of a city.  And when I walk from PE to my locker in the afternoon, I pretend that my locker is my favorite room, because I keep everything there.

One day, one of my bosses got mad at me.  She took away my license.  For two days, when we went to the restaurant, I had to sit at a different table than anyone else.  I was not allowed to sit where I wanted.  So I talked with the boss that I had upset.  She said that I could earn my license back if I could write a list of things that I would not forget to bring to work, because that's what I had done.  So I made the list before lunch and even though I didn't have my license back yet, my boss let me sit anywhere I wanted to.  I think all my bosses, even substitute bosses, are nice and kind and know what's best for us.

FOR Club is a club where we discuss things about how to make our community better and kinder.  FOR club started because of Rachel Joy Scott.  I really admire her.  She was young when she was shot by people who came into her school with guns.  She was a very kind person.  I wish that someday I could be like her.  That is why I joined FOR Club to try to make our world a better place.  I'm on the Gilbert Gives Back Committee.  We try to give back to all of the charities in town and out of town.  A few weeks ago, Mrs. Harris announced that we had helped a little girl get adopted.  I was very happy about our success.  We get new members almost every meeting.  But sometimes I only think people come to meetings because of cookies and drinks we get.  A lot of the times, I wish that people would pay attention to more than just refreshments and pay attention to the community we are trying to help.

A Week of BIG...

Kyla had a really big week this week. Started late in the week with Valentines Day, STAAR Practice Math and Reading Benchmark tests, Valentines Dance, hiking and fishing with her grandparents, a birthday party for her uncle with lots of sweet family, and finally singing a song at church.

Kyla suffers from test anxiety and while she earns A/B's at school she sometimes struggles with endurance and processing in math. Needless to say the long benchmark test was trying and threatened to send her over the edge... :( She had a tummy ache, was shaky, and had her self convinced she did not do so well...

 I really do believe that the CMS effects her ability to focus and stay with tasks that tax her muscle systems. When your body is fatigued so is your mind...

She enjoyed the Valentine dance and both sets of grandparents were able to hang out with us this weekend. SO fun.

Kyla also had the opportunity to sing at her Great Aunts' and Uncles' church this weekend. She sang I'll Fly Away. We just really enjoyed seeing her be brave and bold... all week long.

Start Again

 

I was visiting with a new friend this morning about Kyla Ann and explaining a little about her condition and realized I really missed blogging. I want to find time to share more about Kyla's journey's again. Here is an updated pic of Kyla and hopefully this is one post of many new ones to come!

Fun in the sun

Posting this sweet pic of Kyla girl for all our friends who see and deal with CMS on a regular basis. You probably know this look. She was having such a great time but so weak. Kyla's right eye gets extremely exotropic, turning out, when she is tired. That eye lid also droops and she has a hard time holding her eyes open in the sun. Seems that as she gets older she is able to pace herself in a way that she can regulate the weakness a little better. She would sit or swing when she got too tired to slide, run, or climb. Again, I think the heat plays a major role in the fatigue with our kiddos. Seems to tax their little systems more so than others.

Here is a pic of little sis, Laura! She also had a great time with friends this 4th of July weekend!