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.