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!

kyla turns 9

Haven't blogged in so long... received a very emotional email from a mom of another precious kiddo with possible cms. Reminds me of what a precious gift we have.

Here are a few pics from Kyla's 9th birthday. I am so thankful for hope....

A few moments this holiday season...

Happy Anniversary to us... 12 years !!

Girls Christmas Morning! We were so blessed to have nan, grandad, memaw, pa, and aunt clarissa at our house!!!

Kyla and dad wrote a Christmas play for Christmas Eve night!

Just sweet picture! Couldn't resist!

Happy Birthday Jesus cake!

Strep Throat

The fever started Friday night and then the sore throat, head and body aches, and weakness. I know someday she will really dislike me for posting pics like this of her, but it is just a reminder of what fever can do to an already weak body. That said, she is doing alright as long as we are proactive on keeping the fever away. She has a very hard time sitting long periods or controlling her neck. She also finds it hard to hoist herself in or out of the car (to the dr. office). She told me today it was getting hard to swallow. Just yucky symptoms made worse by the CMS.

Hoping she is well soon....

December is here!

Hi there! The Carter family is doing well! We have had fun the last week and a half with lots of family and friends.. Nana, Grandad, Memaw, Pa, extended family and so many fun friends! Neely celebrates his 36th birthday tomorrow and Christmas is right around the corner.

Kyla is doing well. School is tough this year but she again has a fabulous teacher that works with her and accommodates for her weakness and inattention. Laura is having a blast at the pre-k program at PCA. She enjoys school and making friends.

Neely and I find it hard to believe a semester of the school year is already gone!!!!

For all of our CMS followers and parents of CMS kiddos, I just want to say that I have struggled again with Kyla's disease and the affects it has on her life. Just when I think I have accepted what comes with this part of her life, I find myself getting bogged down again in the "what if's, why's and when will's...." She is such a trooper! Currently she struggles with remembering if she has or has not had medicine, pain in her ankles and legs, general weakness, and attention in school. We go to the neurologist this month for the annual visit and this year we have a few new concerns for him. Medicine dosage, physical therapy issues, etc.

Overall, we have such blessings to be thankful for. She has come so far and is able to voice her hurts and issues more clearly to us now.

Here is a little video from her church choir presentation tonight... Hope you enjoy...

Sabrina

June and July 2010

Trip to St. Louis to see the Everett Family~

Room Makeover in the girls' room!

Pamela and Glen (Cousins) came to visit!

Summer Music Activities for Kids with the Carter Cousins in Paris, TX

Family Pic while we were in Paris!

Aunt Clarissa and Laura at Surfside.

Kyla Boogie Boarding at Surfside Beach Texas!

Here and there...

Here are a few pics from the last few weeks...

Nee and the girls at Red River, NM

The girls at Surfside Beach , TX

The girls and I on the 4th of July

Just a note... I am always thinkning and muddling through how best to help Kyla with the challenges that she faces because of CMS, but it seems some seasons make me more intense for the search of community and help than others. I have recently made more contact with others who have CMS or their children have it through facebook. It is so comforting and rewarding to find others who are on this journey with Kyla.

Most recently our concerns with Kyla are her fatigue (late in the day), physical therapy issues (running and walking form), writing fatigue, inattention, and sleep habits.

We are trying to give her mestinon doses somewhat closer together to see if we can help her body adjust to the long summer days.

Kyla is 8yrs old!

Yes! Can you believe it, my baby turned eight Saturday! What a blessing. Kyla is tough. She is always thinking and dreaming. She loves to be "just a little different"... She is the queen of the one liners. Kyla dreams big and invites others to come along. She loves to read, but reading is really "making pictures and movies in your head." She is a fan of all things water. Kyla is sweet and concerned about others. She likes to joke and kidd around. She loves to eat ice cream and drink Chi Tea- hot of course. Tea parties, dress up, and games are a few of her favorite things. Happy Birthday, princess. Mom and Dad love who you are... Kyla Ann Carter.

School Days, 2010

Kyla and Ms. Donna (school nurse) Thank you for always taking care of me!!!!

Kyla and School friends!

Award for academic excellence!!!!

Kyla and Mrs. Stokes
Laura and Ms. Sharon!!!!

End of the 2009-2010 school year... whew!

Great year --but super busy anf full of new experiences! Both Girls had a great year. Thank you to Mrs. Stokes and Mrs. Sharon. It is a mom and dad's greatest pleasure to see their children loved and cared for. Hats off to you!!! Now let the summer time begin... :)

Then and Now

Looking Back... we've come so far. Thank you Lord for Your Hands...

May 2010

Neely and I are almost finished with our first school year in Plainview. Kyla is about to complete her 2nd grade year and turn 8 years old. Neely reminded me today that in another 8 years she will have her driver's liscence. Not nice... :) These are a few pictures of our family time this Saturday night. The girls love to turn the music on the computer up really loud and dance around in the family room. FUN STUFF!

Kyla and Laura are ready for summer. We plan on spending time together and with family and friends. Hopefully we will go to Red River with both sets of granparents and to Surfside Beach with my parents and sister. We are also hoping to visit Aunt Traci and Uncle Paul in St. Louis and Uncle John and Aunt June in Paris. Between that maybe some VBS and a few trips to Wichita Falls for fun with friends there. Whew... I'm tired already.

Easter Weekend 2010

We had a three day weekend around Easter and loved every minute of our travels. Friday we had lunch with Josh Deerinwater and the Wood Fam. After lunch Friday we drove to Dallas and met Nana and Grandad, Traci, Paul, Andrew, Daniel, David, John, June, Trey, Jenna, Joy, and Julia in Fort Worth. We had supper together and then Saturday morning watched our nephew, Daniel, race in the 1000 meters! It was a great time! We ate at Pappasitos twice and it was a hoot both times... great waitress and awesome food! Saturday afternoon Nee, the girls, and I headed to Gorman and stayed at "the trailer" camping with mom, dad, and Clarissa. Kyla caught a big mouth bass :) and was so excited! We went to church at FBC Gorman. After church we went to my Aunt Jonell's church and had lunch and an egg hunt with my mom's fam. Then the weary travelers set out for home.... What a busy, wonderful, memory making trip.