Carter Family and Congenital Myasthenic Syndrome

Fun in the sun

2011-07-03T18:34:00.005-05:00

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

2011-06-08T15:30:00.003-05:00

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...

2011-01-03T10:24:00.002-06:00

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

2010-12-12T14:14:00.003-06:00

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!

2010-12-05T21:54:00.003-06:00

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

2010-08-07T11:41:00.005-05:00

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...

2010-07-06T13:28:00.004-05:00

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!

2010-05-31T15:00:00.004-05:00

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

2010-05-27T11:07:00.003-05:00

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

2010-05-15T20:53:00.001-05:00

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

May 2010

2010-05-15T20:07:00.004-05:00

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

2010-04-05T21:24:00.005-05:00

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.

Laura Turns Four!!!

2010-03-28T21:27:00.006-05:00

Can you believe how fast our lives roll... My youngest turned four last week and I have a really hard time saying that and believing it. We have enjoyed every day with Laura Hope!! She is a blast to be around and loves life.

She cracks us all up almost constantly with her little ways. As she put it best a couple of weeks ago..."We've had a lot of fun times togehter, huh, Lamby." Love you Laura Hope!

Spring Break Days 3-5

2010-03-18T09:16:00.002-05:00

Daddy and laura at one of the corrals at the Western Heritage Museum.
Nan, Grandad, Kyla, laura, and Nee at the Museum.

Laura's soccer practice last Tuesday.

Kyla and Laura playing Just Dance on the Wii at Memaw and Pa's.

Kyla playing with Aunt Clarissa's barbies. :)

Spring Break has really been a nice change in routine! Tuesday morning we left memaw and pa's and headed home to Plainview. Nana and Grandad got to our house later that afternoon. Wed. we went to Lubbock and had lunch together with Memaw and Aunt Clarissa and then went to the Western Heritage Museum with Nana and Grandad.

Spring Break Day 2

2010-03-15T10:18:00.002-05:00

Spring Break Day 2 was a fun day. We went to church and a then traveled to Memaw and Pa's for fun for a couple of days. We played in the back yard , on the hammock, with Aunt Clarissa's barbie's, with the Wii, went to the duck pond, and of course ice cream at DQ. Thanks Memaw and Pa for a day of fun, fun, fun....

Spring Break Day 1

2010-03-13T17:00:00.004-06:00

Great opening day for Spring Break 2010! Beautiful weather... no wind and about 65-70 degrees!!! Kyla and Laura enjoyed a fun time outside for part of the day while Neely and I worked in the garage and yard and then later enjoyed a movie and books.

Snow in the View and Dancing too!

2010-01-30T09:46:00.004-06:00

Hi friends and family. Plainview had snow and ice... again. The girls and I stayed home yesterday. We were a bit on the lazy side but did manage to get a romp in the snow :)!!!

Neely is in St. Louis with Tracy, Paul, Andrew, Daniel and David. Congrats to Andrew on a win last night!!! Neely went to see Andrew's last regular season hockey game of his senior year. So glad he got out of town during all the miserable weather.

On another exciting note... I caught Laura singing and dancing this morning. The two videos below are her renditions of "Deep and Wide" and "Hot Dog"! Enjoy! I am also posting a couple pics of the girls in the snow yesterday.

New Glasses

2010-01-10T20:20:00.002-06:00

Here are a few pics of the girls tonight. They were looking cute together at bedtime and thought I would snap a few new pics of Kyla's new frames. Thanks Uncle John!!!!

Happy New Year!

2010-01-09T11:54:00.004-06:00

Happy New Year friends and family. The girls, Neely and I have enjoyed some great time together this new year. Here are a couple of pictures of the girls in 2010 and a video of Kyla's rendition of the famous wedding dance Youtube video. It is slow at first, but she picks it up at the end...;)

Nutcracker and the Frog Princess

2009-12-14T08:21:00.004-06:00

Saturday was a special day for both girls. Kyla And I went to see the Nutcracker Ballet in Lubbock. Memaw and Aunt Clarissa met us there. It was beautiful and Kyla especially liked the mice in the Mouse King's army. :) She was also fascinated by the orchestra pit and of course the Sugar Plum Fairy. Aunt Clarissa bought her a nutcracker ornament and then she won a nutcracker statue at the end of the show!

Laura and Neely went to see the new Disney movie The Princess and the Frog. Laura loved it! She loved the frog princess and the alligator that played the trumpet. Fun times had by all!

Kyla and Mom: Ready for the Ballet!

Pics for Christmas Card

2009-12-11T09:39:00.005-06:00

Some Christmas pics for our 09 Christmas card. Our friend Caitlin took them! She rocks!

Christmas Shirts by Memaw

2009-12-08T15:07:00.002-06:00

We woke up this morning to a winter wonderland in Plainview Tx! I guess we had dense fog from around 7pmlast night until 8am this morning and it all froze! It was dangerous but beautiful. The girls wore their new christmas shirts that Memaw made them to school and Mrs. Sharon's house today. Very cute! The countdown for Christmas break is officially 8 days and counting!!

Santa

2009-12-03T19:31:00.003-06:00

The family loaded up and went to the Fair Theatre tonight to enjoy Christmas Storytime and a visit with Santa! After storytime we watched the Plainview Christmas Parade in 27 degree temp and snow flurries. Fun times! We also went to the Brew and visited with the Chavez and Malone Families. Kyla and I enjoyed a yummy WARM Chai Tea. Thanks Nee! Merry Christmas everyone!

Weekends

2009-11-15T17:08:00.003-06:00

Had a couple of really good weekends here lately. My mom and I joined up the first weekend in November and went to see my sister at San Angelo State. It was fun. We shopped and giggled and shopped some more. Didn't really buy much, but had a great time! it was the first time I had visited Clarissa at ASU. We also went to church together that Sunday morning. FUN!!!

This weekend the Wood Family came to Plainview from Wichita Falls! It was great to see them! The girls had a blast playing and Neely and I enjoyed catching up with Steve and Michelle and watching the girls go CRAZY!!! We ran a 5K Saturday morning here at the Plainview YMCA. Michelle ran with us. Then it was off to Lubbock for some Chick-Fil-a and science spectrum/omni theatre. The girls loved it! Then this morning we all went to church together and Neely cooked a great meal for lunch. GREAT TIMES!

Curlers for Sunday Morning Before and After

2009-10-18T09:10:00.001-05:00

Recovering

2009-10-17T17:57:00.005-05:00

We are finally getting better! It all started last friday, Oct. 9. Neely was the first one to be sick, dr. gave him antibiotic and steroid shot and called it sinus infection. Then on Sat. Kyla started running fever. Soon to follow were Laura and I!! Yuck! We all took antibiotic, but I believe it was something viral. We have not all been that sick and at the same time in a LONG TIME!

My mom came on Monday night to help with the girls so Neely and I didn't have to miss any more work. Mom is now back home with the flu!!!! Kyla was swabbed for the flu during all this and her tests were negative not once but twice. Who knows what it was but it was BAD. Praying mom is well soon.

Here is a picture of Kyla on Saturday night. The first full day of fever, she looks pretty pitiful. This pic will probably get me in trouble one day (with her), but I think all the families affected by CMS can relate to this look. It is truly the look of Congenital Myasthenic Syndrome.

Then on down you will see some shots of the girls much improved today, Sat. Oct 17.

SICk Saturday and some pumpkin fun!

2009-10-10T16:39:00.000-05:00

More GRAND pics..continued

2009-09-28T21:24:00.004-05:00

Grandparents all together!

2009-09-28T21:14:00.003-05:00

Here are some fun pics of mom, dad, Nan and Grandad with the girls tonight in Lubbock! We had so much fun!

ARD Time

2009-09-20T19:55:00.004-05:00

Well it is that time of year.... Admission Review Dismissal Meeting for Kyla. Since we transfered from another district we have to have a full annual ARD now after PISD has received records from WFISD. It is always a time to look at how far we have come and I always get a little teary remembering when... well you all know. She has come so far and we want her to continue to feel successful at school. The issues Kyla struggles with that are directly related to the CMS are general fatigue while at school, increasing as the day goes on, handwriting!!!, motor memory/processing, slow reaction time, timed testing, and some bladder incontinence. She adapts and compensates beautifully. We think learning to type and use a word processor is going to be essential from here on out.

Here's a couple of pics of the girls tonight. I revisited the Kyla video (located here on the blog) last night and the contrast is a stark comparison to these pics I am posting tonight... thank you Lord, Savior, Healer, Miracle Bestower, Hope Giver, All that she (and we) need!

September Evening

2009-09-17T20:11:00.003-05:00

Kyla has started school and is doing well. She always seems weak at the end of the days and her eyes always need to adjust at the beginning of school. Her eyes are very fatigued by the end of the day. All in all it has been a pretty smooth start. A few bumps in the road as far as math and timed tests ago going. We have our first ARD of the year on Sept 21.

Here are a few pics of Kyla. She put on a show in her room for Laura and I tonight. It was based on an audio story of Paws and Tails. She drew background pics and used laura's blocks and her Littlest Pet Shop toys. It was a grand production.

New Adventures in Carter Land!

2009-09-01T20:48:00.005-05:00

Here is our July-August Story in pictures! Sorry I am BEHIND!!!

1st day of a new school for all of us!Just hanging out!

The GIRLS!!!

Dad and Laura! I love this one!

At Palo Duro Canyon with the Woods

Laura at the Texas play

Camping in red River with Memaw, Pa, Aunt Clarissa

Cadillac Ranch! The girls actually painted a car! Amarillo Texas!

Fun in the sun!

2009-07-12T22:09:00.004-05:00

Great summer fun in the backyard at Memaw and Pa's house!

Crestway Family Picture

2009-07-12T08:23:00.003-05:00

Here is the family at our new house in plainview! We took this saturday before Neely went back to Wichita Falls for the last week at Faith.

Plainview

2009-07-07T22:26:00.003-05:00

We are here in Plainview and getting settled in. Girls love the new house and seem to be adjusting well. I am missing friends but am definately working hard to get settled here. Mom has spent the week with me since Neely is still in Wichita Falls! I miss him... Mom and I have had fun working on projects and being with the girls. Put some other pics of the house on Facebook. Thurs- Sunday Clarissa, Nana, grandad, Dad and Neely were all here unloading and setting up. We also have had very generous and kind Plainview folks come and lend a hand and visit with us. Thank you Lord for providing for us and going before us...everytime!

Laura and Reece...BFF

2009-06-26T13:18:00.003-05:00

These two are 1 month apart to the day! They love to play and act like sisters. Reece is spending the afternoon with us while mom and dad Wood are moving into their new home. Here are some pretty cute pics of the two of them hammin it up as usual!

SMAK Video

2009-06-21T18:43:00.002-05:00

SMAK

2009-06-21T17:50:00.004-05:00

Here are few pics from SMAK (Summer Music Activities for Kids). Kyla participated in this last week. She spent the week in Paris with her cousins! Jenna, Joy, and Kyla had a great time. They went Monday- Friday and performed the musical for parents and friends on Friday. Aunt June was in charge of the drama for the week and also was with Kyla when she asked Jesus into her HEART!!! Yeah, praise God!

Dance Recital

2009-06-15T09:32:00.003-05:00

Kyla Ann completed her 1st dance season with a great recital Friday night. She was a red bird in Hansel and Gretal: the ballet. She was precious and also did a little tap too. Nana, Grandad, Memaw, Pa, Aunt Clarissa, mom, dad, laura, Jo, Michelle, Steve, Riley and Reece were all in attendance to cheer her on. She loves to dance! Here are a few pics from the night.

Move Update: We close on our house here on June 30th and close on our new house in Plainview on July 3rd. We believe Neely's last day at Faith Baptist will be around July 19th... The girls and I will go get settled while Neely stays here for a couple of weeks. We are excited but incredibly sad about leaving dear friends. Love you all,

Kyla turns SEVEN !!!!

2009-06-01T14:41:00.003-05:00

Kyla turned seven yrs. old May 29th and we are amazed at the journey. Sometimes it seems like only yesterday... I am posting some pics from the party below. She had a pink poodle in paris party. :) A few friends, family and lots of love.

We are in "contract pending" stage on our house here in Wichita Falls and also in contract on a house in Plainview!!! Crazy, blessed!!! Thank you Lord, again and again and again.

Kyla and I are excited to officially start summer break today. Yahoo!
Love,SC

Catch up!

2009-05-10T14:11:00.006-05:00

Hi friends and family! Sorry for the long blog drought!! Kyla is feeling great a month after surgery and has recovered very well. She is such a trooper!! We are hoping her overall general health is much better. She has missed 18 days of school this school year!

Easter was a few days after surgery and so below are some pictures of our family celebration.

Big Family news to follow: Neely and I have accepted teaching contracts for Plainview, Tx ISD. Neely told the church today and has requested to stay at Faith until middle to end of July. We are sad to leave Wichita Falls and our awesome friends. Nine years and many celebrations and trials!!!! We have made lifelong friendships here. Wow! Hard to say goodbye.

Thought I would leave you all with some pictures on this Mother's Day '09 too. Love to all.

home from surgery

2009-04-10T19:46:00.002-05:00

hi friends--

We are home from tonsil and adnoid surgery. Kyla did well and is home in bed recovering. Pretty excited about her milkshake. She had a bit of a hard recovery at first, lots of pain, but after a couple of popcicles and about an hour later she seemed to do better. The ride home was adventurous... not for the weak stomach people. Blood, throwup, and hard time breathing a couple of times. Much better now though! Love you all and thankful for your prayers on our behalf...

Sabrina

Laura's Birthday PIctures

2009-04-04T08:53:00.005-05:00

Hi there friends! Sorry these pics are so delayed... Here are scenes from Laura's 3rd birthday party!!! WE had fun and Laura enjoyed being Minnie Mouse for a night!!

I think she's getting a little help here...

Mom cannot believe she has a three year old... wasn't she just born!!!

Prissy!

Memaw and Pa celebrated with us!

Here is grandad, Nana, Jo, and Aunt Clarissa

More party scenes!!!

Kyla's New Cut

2009-03-31T19:20:00.001-05:00

More weekend pictures

2009-03-16T17:20:00.004-05:00

More Pics...

Picnic with Ri and Reece

Nee and Daniel

Laura and David

Joy and Kyla

Grandad and Traci

March Madness

2009-03-16T17:03:00.003-05:00

Hey friends and fam! Glad to say Kyla is much better! Thanks for all the prayer! The appointment with the ENT was short and bittersweet. He recommends tonsils and adnoids out. We set the surgery up for April 10th. Too much infection and very large tonsils and adnoids!

On a lighter note, March brings much excitement. We are entertaining "Flat Justin" for about a week and he is participating in our March activities. See picture below... Kyla performed in the first grade PTA program, A Little Bit of Texas, and was a star!!! We went to a cabin in Broken Bow, Oklahoma for a family reunion this past weekend and had a blast with Neely's parents, siblings, and the girls' favorites... the cousins!!!! We had a great time! This week is Spring Break. Today Riley and Reece came over for a picnic and then the girls went to play at the church while Neely and I went to Faith Mission and worked on some projects there with our small group class from church. It was great and much work was completed. More later... we are having Laura's 3rd birthday this Friday and Memaw, Pa, and Aunt Clarissa are coming in Tuesday or Wed.

Love you all-

Flat Justin and Kyla at school

Kyla at the PTA program

Kyla just about to square dance

Laura and cousin Julia

The girls loving the mini vacation at the cabin!

sick girlie

2009-03-07T13:28:00.003-06:00

Hi friends and family. We need your prayers. Hoping I am writing this late enough in the sickness that I can report soon that she is much better, but for the mean time... Kyla came home from school on Tuesday, March 3, with fever and has had a sore throat and fever every day since. Today, March 7, she went fever free for about 4 hrs and now it is back again. She is weak and has a hard time swallowing. Went to the pedi wed. and he called Friday and said the strep culture came back negative. She is taking Penicillin and has been for about 14-16 days. Pedi put her on that when he treated her for strep about 2 1/2 weeks ago. She really has not been completely "sickness" free since the beginning of December. She gets better for a couple of weeks and then sick again... We have an appointment with an ENT specialist at Cook Children's Hospital for a consult on Tuesday, March 10. Love you all, thanks for the prayers even now...

Sabrina

Sesame Street Live!

2009-02-28T15:15:00.004-06:00

Neely got a call on Monday last week. We won tickets to Sesame Street Live. Yahoo! It was the next day and we were all so excited. He had registered to win at Double Dave's Pizza and he actually won!!! The girls had a blast! We got to go early and meet a couple of characters. The first pic is the girls when the characters came in the room before the show started.

Valentine weekend and stuffy stuff...

2009-02-16T21:42:00.007-06:00

Here are some Valentine weekend pics. Thanks Aunt Clarissa for coming and hanging out! We love you. I also spent a lovely dinner with Nee and we had a great time together.

On a grumpier note, our fam is still struggling with sickness. Kyla is on her 4th round of antibiotic for Strep/ in the last two months. I made her an appointment with an ENT specialist for March 10th. Laura is congested, Neely's cough persists and me I AM SO STUFFY!!! Okay then, that about sums it up... ;)

Clarissa, Kyla and Laura- Aunt Clarissa rocked because she took the girls for a Happy Meal!!!!

We ate at the Pelican for V-day. Yummo!

Kyla with purse and outfit Memaw sent

Laura talking... as usual

Tea Party Time

2009-02-10T20:29:00.004-06:00

Kyla and Laura (mainly Kyla) set up a grand tea party for the family tonight complete with hot tea with milk and sugar, small rice krispie squares and tiny pink cookies. We all sat in the living room around the small table that memaw and pa got Laura for Christmas. Nana and Grandad sat on small stools, mom and dad on the dora couch and Kyla and Laura in the small chairs. It was quite a sight and all too much fun. Kyla served us in grand style and even at times with a British ascent :) Oh yes, it was a sight to see and hear.Tea party posers

Nana and Grandad

It's a dog thing

2009-02-09T19:52:00.006-06:00

Here is the family tonight. Yes, those are stuffed dogs on the end of the girls' belts --hence "walking the dog." Only here in the Carter family!!! Daddy got involved later and the girls thought that was way cool. No harm came to the stuffed animals in the making of these pictures.

Sunday Morning Blues

2009-02-01T10:00:00.003-06:00

Hey everyone.... We are home this morning instead of at church. Laura's got some big "D" from her antibiotic, yucko! Started during the night and had a little this morning earlier. We are missing our Sunday morning routine and our re-juicing for the week at Faith this morning. We are all tired of someone being sick all the time... Here are some sister pictures we took this morning while being lazy together. Love all!

Sabrina

Any which way...

2009-01-31T14:51:00.002-06:00

This is how Laura fell asleep for nap today. Snug as a bug in a rug. Whatever works...

Random Saturday Night Pictures

2009-01-17T19:07:00.006-06:00

Here are some random pics of the family tonight. Neely was at the FliC all day and after coming home we used one of those great holiday gift cards to Logan's to have a yum-o dinner! Kyla got a new Leapster game and she has enjoyed that off and on today. Laura is just happy to play in the playroom with her "people" (that's anyone who will stay in there with her). I enjoyed a day at home hanging with the girls, little laundry, and a short nap! I am so thankful... Oh, I almost forgot, the last picture is Laura "checking her email". :)

Much Better

2009-01-15T18:35:00.005-06:00

The girls are much better! Neely now has a sore throat and I have a bit of a cold. I think that is usually how it goes in families, right? Thanks for praying for us all. The girls and I are ready for a 3 day weekend to recoup. Daddy has Friday off but works on Sat. and Sunday.

Love,

Sabrina

Still sick

2009-01-10T09:49:00.003-06:00

Kyla is still sick today. Took her to clinic care this morning and she has a ruptured eardrum. Yuck. Happened so fast. She didn't complain with her ear at all until yesterday afternoon about 4:30 or so. Then it got pretty intense right before bed. I guess that explains all the fever and blahness. Here is her latest picture... Oh and one of Laura too. She is trying to sympathize with her older sister.

Kyla is sick.

2009-01-08T19:21:00.006-06:00

Kyla started back to school this week following Christmas break and was glad to go back but hard to get up in the mornings. Not a morning person on school days!!! Tuesday, Wednesday and today I got reports from the school nurse and her teacher that she was not looking her best (eye turned out, droopy lids, and sluggish body and attitude). After her dentist appointment I brought her home around 4:15 and took her temp. Sure enough...fever! Yuck! Hope it goes as quick as it came. Managing it and keeping it down with Motrin. Her little nose is running and has caused her face underneath to become chapped and raw. That all happened in a matter of hours because her nose was not like that when she left for school this morning. Here she is in her daddy's lap. So sad!!

love all,

Sabrina

10 Year Anniversary

2009-01-02T19:14:00.004-06:00

Neely and I have been married for ten yrs. today, Jan 2nd. We have a great life together and many journeys and adventures shared!!! We are looking forward to many more years to come! Neely took me to the Rose Parade for our anniversary and it was incredible. While in LA we also saw A Christmas Carol at the Kodak Theatre as well as taking in many breathtaking beach views. We had a great time and the girls made memories with Memaw, Pa, and Aunt Clarissa while we were away!! Happy New Year!

Sabrina

Christmas Morning 08

2008-12-27T15:34:00.002-06:00

Girls had a blast- went to Sabrina's mom and dad's and spent three days. Girls staying for a week, Neely and Sabrina off on a 10 YEAR anniversary adventure!!! Happy New Year!

Love ya all-

Sabrina

Christmas Time

2008-12-23T11:41:00.005-06:00

Sorry about the long delay on new pics and news. This time of year is crazy busy and now that the day we spend so much time preparing for is almost here, I thought I would send some pics of the girls in their Christmas dresses. December has been a month of finishing classes, school and work parties, and lots of time with family and friends. We also celebrated a few birthdays in there somewhere. I turned thirty...WOW! Can't believe that! Merry Christmas Friends. We love you all so much. May you all feel the love of Christ this Christmas. Happy Birthday Jesus!

Sabrina

New Family Photos

2008-11-11T17:29:00.003-06:00

Loving our new family photos! Our firend Meegan Weaver took them and you can see more of her awesome work at www.photographybymeegan.com !!!

Pumpkin Patch

2008-10-24T06:35:00.004-05:00

The girls and i went for a little adventure at Smith's Garden Town in search of a few pumpkins for my class and for fun at home. We had a fun time and the girls thought every pumpkin was the one!!!

Costume Party

2008-10-20T19:47:00.004-05:00

Neely and I went to our adult 2 sunday school costume party on Sat. night. It was a blast!!! Here is a pic of our costumes of choice!!!

ZOO

2008-10-10T21:20:00.006-05:00

About time we updated this! Kyla had an ophthalmology appointment today so I took a day off and Nan, Grandad, Laura, Kyla and I went to the zoo before the appointment. We had great fun and Kyla's appointment went well. Kyla's favorite animals were the monkeys and Laura's either the zebras or birds. We also ate at Sweetie Pie's RibEyes on the way home. YUMMO! Here are some pictures from the adventure.

Camping out and Walking laps

2008-09-16T21:25:00.007-05:00

The girls and I had a great time camping out with memaw, pa, and Aunt Clarissa last weekend. The highlights included frog catching, fishing, roasting marshmallows, driving pa's truck, and playing with cousins. We had a blast.

We are back in the swing of things at school this week. Kyla had an emotional Monday. Talking out in class with a guest teacher earned her and a few others some laps around the track. Note: maybe not an appropriate consequence for a kiddo with CMS. She was pretty tired and emotional the rest of the day. We live and learn around here...
Sabrina

medicine and dance

2008-09-07T15:22:00.003-05:00

Took some pics of Kyla and Laura before church again today. Kyla is managing first grade okay and seems to love being back in school. She starts dance tomorrow and is excited about that. Neely and I are anxious to see how that experience goes for her. She went to the neurologist in Ft. Worth last week and is officially off the liquid Mestinon and on to the pill form!!!! She is so excited. The pill "tastes much better, mom." Same dosage just not the raspberry flavor!

Laura is adjusting to Kyla being at school and always ask when we get home, "How you day mommy?" Love that girl!!!!

Love to all!

Sabrina

School Starts

2008-08-25T21:01:00.003-05:00

Here are a few pics of the 1st day of the first grade. Kyla said it was "fantastic, perfect, just what I dreamed of..." :)

New Beginnings

2008-08-23T10:41:00.003-05:00

A few pictures of the girls the last few days before Kyla starts 1st grade. Kyla has been sick with a cold and a little on the weak side, but she is such a champ. She is really excited about school. Laura will miss her so. I will miss them both...

The Drama

2008-08-05T22:05:00.003-05:00

I got home tonight around 9:10 and found a little drama at the Carter house. Kyla was crying and saying, "Oh, this is just horrible!" as only Kyla can. Sabrina put the girls to bed at 8:30, and, right before I got home, Kyla had started screaming. While in bed (supposedly trying to go to sleep), she wadded up a small piece of a Kleenex and stuck it in her nose (don't know why). Well, it got stuck up in there. When I got there, Kyla was laying down flat and Sabrina was looking up her nose to see if she could see the Kleenex. Laura was just hanging out, watching the drama unfold before her. The girls sleep on a bunk bed, with Laura on bottom and Kyla on top. Anyway, Sabrina couldn't see the Kleenex, so we got Kyla to tell us how big the piece was and it seemed the piece was small enough that she had possibly swallowed it. Of course, Kyla just kept saying how horrible this whole thing was. She said that her nose felt "pinchy." Then, I asked Kyla if she had tried to blow it out. She replied in Kyla style, "I haven't thought of that." She blew her nose a couple of times and out flew the small piece of Kleenex. All was fine once again in Kyla's world and both girls were able to go to sleep. There's just no manual for these sorts of things.
nc

Fun in the "Hot" Sun

2008-08-05T12:40:00.003-05:00

The girls and I spent some time in the backyard this morning. It seems the best pictures happen when you are really not trying to get them. I love these girls!
Sabrina

Getting Stronger

2008-07-27T22:11:00.002-05:00

Kyla has had a good couple of days with her strength level. Her eyes are open a little wider than in the past few weeks. Her eye turn is less as well. This is a praise as our little Kyla is returning to form. She had a blast tonight dancing at church to the country music of the Faith Baptist Church Parking Lot Pickers. We all enjoyed the delicious homemade ice cream.
nc

Sunday Morning

2008-07-27T15:54:00.006-05:00

Hey friends. Here's some pictures of the girls this morning before church and one of Laura playing dress up. Thought the blog family might enjoy them. They were so cute together. We put the girls in the same room last week. It has been an adventure, but really fun... Laura gave up pappy ( pacifier) and being in the same room has made that transition easier!

Sabrina

Still trying to figure this kid out

2008-07-23T21:11:00.002-05:00

Kyla still is not back to the Kyla of old. Her eyes are very droopy and her right eye continues to consistently turn out. We have stopped giving her the Albuterol to see if that will help, but that hasn't made a difference. It's so frustrating to see what messing with her medication has done for her.

Good Morning

2008-07-21T07:26:00.002-05:00

Kyla had a pretty rough "eye" day yesterday. You ask her about it and she says, "I see fine, mom." Good attitude, that kid. :) Having a little breakfast with Jesus this morning and found this verse in The Message:
Psalm 36:5-6

God's love is meteoric,
his loyalty astronomic,
His purpose titantic,
his verdicts oceanic.
Yet in his largeness
nothing gets lost;
Not a man, not a mouse,
slips through the cracks.

Powerful stuff!
Sabrina

Party Time

2008-07-19T12:46:00.002-05:00

This is a weekend of birthday parties. Yesterday, Kyla went to a very special luncheon for her friend Riley's birthday. They played dress-up and had a tea party. Kyla had a great time. Last night, we went to Riley's party and had a blast. Today, Kyla goes to a party for a friend from school.

Kyla has now been back on 5 mL of Mestinon for a little over a week. She is doing well, but her eye trouble continues. She's pretty much back to normal. Her bladder problems are kind of hard to track. For the two weeks we were on the lower dose, her urgency to go to the bathroom was just like it always has been. Her incontinence seemed to be a little better. We noticed yesterday that her incontinence was pretty bad, so that is something we have to consider going forward.

Since we are generally vague on what is a high dose of Mestinon and what dangers come along with a higher dose, I called the drug company that makes Mestinon to see if there are any dangers they know of. I have read the label on the bottle several times and couldn't find a whole lot about overdosage. All I could find is that there is a point where the Mestinon will start to make the patient weaker instead of stronger. When I called to talk to the drug company, I got to talk to one of their pharmacists. She told me exactly what the bottle says, which is that if we give our child too much Mestinon, she will get weaker. She also told me that each person responds differently to Mestinon, therefore the company doesn't have a specific dosage recommendation. She says that we need to follow the directions of our doctor and work with our doctor to find the right dosage for Kyla. She did say that side effects, such as nausea, vomitting, and stomach cramps, will increase with higher doses. Kyla doesn't seem to be affected by those, however. I forgot to ask her about Kyla's bladder problems and if Mestinon is known to cause bladder problems.

As for the Albuterol, I still do not see any improvements from taking it. We will probably try to add another dose in the near future to see if there are any improvements. Dr. Engel told us to try to get her up to 2 mg, 3 times a day and we're currently at 2 mg, 2 times a day. It doesn't seem to make her as shaky anymore, so adding a dose shouldn't be too hard. We'll continue to update her progress on the Albuterol.
nc

San Antonio Vacation

2008-07-13T14:53:00.003-05:00

I took off Thursday through Saturday and we took a little vacation down to San Antonio. We went to the Alamo and Riverwalk on Thursday and went to Sea World on Friday and Saturday. We all had a really good time. We met our friends Steve and Michelle Wood with their two girls Riley and Reese in San Antonio on Thursday and had a great time with them. All of the girls really enjoyed Sea World and getting to see all the shows together.

While on the drive down to San Antonio, Sabrina called Dr. Engel's office at Mayo. She told Dr. Engel's assistant that Kyla has been significantly weaker since we lowered her dose of Mestinon while at the Mayo Clinic. Dr. Engel returned the phone call and told Sabrina to raise the dosage back to what it was before Mayo. Sabrina then told him that he and Dr. Selcen had lowered the dose because of fear of overmedication. He said that it is logical to conclude that since her body responded positively to the higher dose, it is dose that she needs. So, we have raised her back to 5 mL 3-4 times a day. It's kind of hard to tell how she's doing because we've been pushing her much harder than usual since the increase. She was out in the heat a good bit of Thursday at the Alamo and Riverwalk. The sun always zaps her strength. Friday, we were at Sea World from 10 am until 7 pm, and on Saturday from 9:30 am until 2 pm. Needless to say, Kyla was weak all weekend, especially in her eyes. She had a great attitude despite those eye issues. In fact, she had a blast and did really, really well. We took a stroller for Laura and Kyla rode in it a little on Friday evening and then a little bit on Saturday, but she walked most of the day both days and didn't whine much about it. I would guess that the higher Mestinon dose was helpful, but I don't really know for sure. Today, she is recovering very well.

Check out some pictures from our trip. We had a blast!!
nc

Pictures from San Antonio

2008-07-13T14:48:00.001-05:00

Medicine Update

2008-07-09T20:17:00.002-05:00

Just a quick update on Kyla and her medication. Kyla seems to be less shaky after taking the Albuterol everyday, so we have upped her dosage to 2 mg at 8 am and 2 mg at noon. We still have no idea if this med. is helping, but I don't think it's hurting anything. Just when I thought she was getting a little stronger, her eyes were absolutely terrible this afternoon. Tonight, I was talking to her in our church gym and her right eye was turned way out. I could only see the white of her eye.
nc

A Mini-Vacation

2008-07-09T12:37:00.003-05:00

We are gearing up for a little trip down to San Antonio. We'll leave tomorrow morning, drive to San Antonio, and check out the Alamo and the Riverwalk. Friday and Saturday, we are going to Sea World. Kyla is looking forward to the trip and she can't wait to see Shamu.

Kyla is a little stronger the past couple of days, but is still only about 80% of what she was before the Mayo trip. Her eyes are still droopy and her right eye continues to turn out consistently. We are waiting to hear from Dr. Packwood (Opthalmologist) after he speaks with the Mayo doctors about Kyla's significant decrease in strength.
nc

Fun on the Fourth

2008-07-05T10:32:00.005-05:00

We took the girls to Castaway Cove Water Park yesterday. They both had a blast. Kyla especially had a lot of fun. She rode the rides and made it through the day with no problem. She is definitely weaker than she used to be, but her attitude is great and she just keeps on plodding along. She loved the new ride at Castaway Cove, which is called the Cliffhanger.

Last night, we went to Freedom Fest at Shepard Air Force Base just north of Wichita Falls. We listened to Tops In Blue and then watched the fireworks. Once again, Kyla did fine and enjoyed the fireworks.

nc

some pictures from last week

2008-07-04T09:33:00.004-05:00

Here are some pictures from last Friday.

Make an on-line slide show at www.OneTrueMedia.com

It's in the eyes

2008-07-03T20:48:00.002-05:00

We took Kyla to the eye dr. today- all day! It was a crazy trip. Late appointment and bad traffic. Anyway, he confirmed for us what Neely and I feared; her eyes are much weaker on the lower dose of Mestinon. Her strabismus is worse. Eye Dr. will contact Neuro. Dr. and see what needs to be done. If we can't adjust the mestinon, then we will need to work on the glasses prescription and maybe start patching her eye again...bummer. Eye Dr.'s comment was something like the difference is "significant."

mom's thoughts in the morning

2008-06-28T09:25:00.004-05:00

You know, I think sometimes our expectations lead us to make up our minds about how our life will go before we remember to ask the King of Kings about any of it. I know that sounds really simplistic but that is kinda how I feel about this whole thing with the higher mestinon vs. lower mestinon and a dose of Albuterol. I sometimes assume striving for the most strength at all costs is the "right" thing to do. It seems that we may need to trade a more stronger Kyla for a Kyla who is a little weaker overall but has less bladder issues and potentially less long term side effects from high doses of Mestinon. The best thing about all of it is, she is just living life and enjoying the adventures. What a blessing. Friends and family, please pray for our family that we will have clear minds to ask the Lord what is best, and that we would have patience to see the long look down the road,

Love you all.

Summer Fun

2008-06-27T20:02:00.003-05:00

Kyla has had a fun day playing with her cousin Joy who is visiting for the weekend. Those two have put on a dance show, played inside, played outside on a slip'n slide and in the little kid pool.

Kyla is still on the weak side of her normal self, but she doesn't let a little weakness get her down. I would say she's functioning at about 75% of her pre-Mayo self. Once again, we've not seen any effects of the Albuterol, other than a noticeable case of the jitters this morning and afternoon.

Pictures from the zoo on Wednesday

2008-06-27T11:23:00.004-05:00

Photo and video editing at www.OneTrueMedia.com

We are home

2008-06-27T08:37:00.003-05:00

After another uneventful day of travel, we arrived home last night at 9:30. Thank you to all who have prayed for this trip and for Kyla. We are blessed to have had no travel problems.

Kyla is now on day 3 of Albuterol. She is taking a pill form of Albuterol. On Wednesday, she took 1 mg (half a pill) at 8 am and another 1 mg at noon. Yesterday, she took 2 mg (one pill) at 8 am and 1 mg at noon. Today, she has already taken 2 mg at 8 am and will take another 1 mg at noon. We will work her up in the next couple of weeks, with a target goal of 2 mg at 8 am, 2 mg at noon, and 2 mg at 6 pm each day. So far, the only side effect we have seen is a case of the jitters. She is a little shaky this morning after taking the pill. However, it's hard to say that we've seen any change in her muscle strength at all. Our starting of the Albuterol was at the same time that we decreased Mestion from 5mL to 3 mL 3-4 times a day, so any advantages of the Albuterol have been more than negated by the significant weakness caused by the decrease in Mestinon. We'll continue to journal the effects of the medicine changes on Kyla and hope others find this helpful. If you are a CMS patient and take Albuterol, we'd love to hear from you (neely4606@hotmail.com). We had heard of Ephedrine as a treatment for CMS, but the use of Albuterol was a new one for us.
nc

Going home today

2008-06-26T08:11:00.005-05:00

We go home today. We drive to Minneapolis and fly out at 2:30 and will be at DFW at 5.

Kyla's Mestinon dose has gone from 5 mL to 3 mL 3-4 times a day on this trip. I pray that in the next week her body will adjust and we'll have our little Kyla back to where she was before we came. We would love to hear from other parents who have children with a CMS. My email address is neely4606@hotmail.com.
nc

The picture to the right is from yesterday. The Internet connection here at this hotel was really slow last night, so I gave up on uploading it yesterday.

A final meeting with Dr. Engel and Dr. Selcen

2008-06-25T17:17:00.007-05:00

We had our last meeting with the doctors today. We saw them together at 1:30. They agreed that Kyla is doing very well. They also agreed that Kyla's Mestinon dosage should be less and that we should continue trying the Albuterol. They recommended that we come back every two years or more often if we'd like.

This is Neely typing, so this is my opinion, not necessarily Sabrina's. I trust the doctors and want to do what is best for Kyla. However, we have given Kyla the lower dose of Mestinon only once last night and a three times today and she is noticeably weaker. I would say significantly weaker. I hoped and prayed we would leave here better than when we came. The opposite has happened and it's frustrating. The Albuterol seems to make her a little hyper, but doesn't seem to make her any stronger. We'll give it while to see if things change, but I'm a little discouraged right now. We just went swimming and her eyes we so droopy. It's like we've taken several steps backward.

On another note, last night we had to measure Kyla's oxygen saturation while she was sleeping. But, Kyla took it off in her sleep and there wasn't enough data to make the test legit. So, we get to repeat the test tonight. We're doing this because Kyla's oxygen saturation level went too low during the sleeping portion of her EEG yesterday. Hopefully, we'll get good data tonight and everything will be fine. We will consult with Kyla's pulmonologist at Cook's in Ft. Worth when we return if there is a problem with the test tonight.

Other than the doctor's visit, we have just played today. We went to a really cool park this morning and the girls had a blast. After the doctor, we went to a little zoo about 10 miles from Rochester. The girls really enjoyed looking at the animals. Tonight, we went to Rochesterfest and had fried food, corn, and dippin dots. I got to enjoy some Cheese Curds and Mini-donuts, which were amazing. Kyla and Laura loved their hot dogs and dippin dots. There were a ton of people there, so it was a little overwhelming for Laura.

A long day at the Mayo

2008-06-24T20:05:00.006-05:00

We arrived at the Mayo at 8 am and didn't leave until 4 pm. Kyla had a chest x-ray, urine test, and Electrocardiogram early on and Kyla did well through all of those tests. Then came the EEG. She did not like any part of it, and did not fall asleep, which was required in the test. So, she had to be sedated for the last part of the test. The nurse who administered the sedation was not eager to sedate her for some reason, so we spent a good bit of time just waiting for her. And when she came in, she wouldn't sedate her because Kyla still had a blood test to go. So, our EEG tech went to work and got orders for the sedation and we eventually were able to finish the test. A 45 minute test took 2 and a half hours. That was quite frustrating. This is our second trip to Mayo and both times the EEG has been a terrible experience. Anyway, after the EEG was over, Kyla had blood drawn and then we had lunch. After lunch, we met with Dr. Selcen, a neurologist. During this meeting, we discussed putting Kyla on another medication. She agreed with Dr. Engel that 3,4 DAP is not worth the risk for Kyla, but she also suggested we try Albuterol, which Dr. Engel had mentioned yesterday. This all deserves a little detail.

Kyla's problem is at the neuromuscular junction. The nerve sends Acetylcholine to the muscle where it is received by Acetylcholine receptors. Also in the junction is Acetylcholinesterase that cleans the Acetylcholine that remains in the neuromuscular junction (this is really a crude explanation, but it makes sense to me). Kyla's problem is she is deficient in Rapsyn, which is crucial to proper function of the Acetylcholine receptors. She currently takes Mestinon, which inhibits the Acetylcholinesterase, thus giving the Acetylcholine more opportunities to find the receptors. This has been our miracle drug. 3,4 DAP helps send more Acetylcholine into the junction and has been positive in treating folks like Kyla. There are risks with this, however, and we will not try this at this time. Two other drugs have been clinically shown to help folks like Kyla, but both Dr. Engel and Dr. Selcen told us that it is not known why these two drugs work. They are Ephedrine and Albuterol. Ephedrine is almost impossible to get, but Albuterol is easy to get and seems to work better than Ephedrine. So, we are going to start Albuterol tomorrow. We also will try dialing back the Mestinon a little, as Dr. Selcen says our dose is too high. We have no tests tomorrow, and will see both doctors tomorrow at 1:30.

The other big news of the day is that the EEG was normal, but when Kyla was sleeping during the test, her oxygen saturation level was low. In fact, it was low enough that it should have woke her up, but it didn't. So, we have a machine to measure her oxygen saturation while she sleeps tonight. We'll see what happens with that.

Even though it was a long day, we did have fun again tonight. After an adventurous meal, we had ice cream and went swimming again. Laura is finally starting to swim around a little and Kyla continues to have a blast in the pool.

Thanks David and Stevo for the comments and your prayers. Thanks to all who are praying for our little Kyla. She bounces back from hard times very well and this trip has been no different.

The following slide show are pictures from the day.

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No Mestinon

2008-06-23T19:07:00.003-05:00

For those who didn't know Kyla before she started taking Mestinon, check out her eyes on this video. She took Mestinon at 11:30 am on Sunday, then didn't take it again until after the EMG. This was to see more accurately how the 3,4 DAP would react with Kyla. Anyway, this video was taken before the EMG and she was pretty droopy. Follow her right eye as the video progresses. Her right eye tends to turn out when she is sick or tired. Without Mestinon, it just turns out consistently. Her mouth also doesn't close in this video. She also has a hard time keeping her head upright.

Dr. Engel

2008-06-23T15:17:00.004-05:00

We visited with Dr. Engel today. The above image is from the Mayo Clinic's Neurology display. He's the guy who does a lot of research on folks like Kyla. In our meeting with him, we discussed how well Kyla is doing. He said the EMG looked good from this morning and that the 3,4 DAP appeared to help her a little. However, she is doing so well, he would recommend that we not start the 3,4 DAP as the benefits do not outweigh the risks since Kyla is doing so well.

This is Neely typing and Sabrina and I haven't fully discussed this yet, but I'll give my gut reaction to this news. On one hand, it is great to hear that Kyla is doing so well for someone who has a Congenital Myasthenic Syndrome. She completed Kindergarten and did really well in the process. On the other hand, if there is something out there that will help her even more, I would love to give it a try. She has trouble with fatigue in so many areas, such as writing, looking at the board, reading, running, and on and on.

We have 5 more tests scheduled and meet with Dr. Engel and another neurologist later in the week. By then, he may have other recommendations.

Kyla is recovered from the EMG and is ready to go to the park. Here's a few pictures from today's visit to Mayo.

Pictures from today's EMG

2008-06-23T15:03:00.007-05:00

Kyla at St. Mary's Hospital getting ready for the EMG

What a family!

Kyla and Mom getting ready for the EMG. Sabrina got to go and watch them start the iv before she had to come to the waiting room with me while the doctors did the EMG.

Recovery. Kyla was pretty groggy.

Mayo Monday

2008-06-23T11:25:00.002-05:00

Well, test one went as planned with a couple of additions we didn't know about initially. She actually had the EMG while on a dose of the new 3, 4 DAP (which is in pill form, and Kyla swallowed it!). The doc, Dr. Krum, said he saw an improvement in muscle response during the test. Praise God! We see the CMS doctor, Engle this afternoon. He should be able to tell us more then. Thanks for the prayers. She was a trooper during a not so pleasant test! God is good. More later today.
SC

Mayo Sunday

2008-06-22T19:52:00.002-05:00

Today, we went to the Underwater Adventure Aquarium at the Mall of America. The girls had a blast going through the aquarium 3 times plus they got to pet the Stingrays and small sharks (no teeth!). Kyla also got to ride a roller coaster with me and the Log Ride with her Pa. About midafternoon, we headed south to Rochester and we went swimming in the pool at our hotel. All in all, another great day of travel, with Kyla continuing to say this is the best vacation of her life. We start at the Mayo Clinic tomorrow, with a 6:45 am appointment for an EMG.
nc

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Mayo Trip Saturday

2008-06-21T20:56:00.004-05:00

We flew to Minneapolis today on the beginning of our Mayo adventure. Both Kyla and Laura did exceptionally well on the plane. When we arrived, we checked into our hotel and headed straight for the Mall of America. Kyla really liked Lego Land and riding a few rides in Nick Land. Laura also rode a couple of rides and loved them both. Pa and I brought the girls back to the hotel where we are trying to get Laura to sleep. Sabrina, Meemaw, and Aunt Clarissa stayed at the mall and we'll go get them later. All in all, it was a very smooth day of travel and spirits are high in the Twin Cities.

Tomorrow, we will experience the Underwater Adventure Aquarium at the Mall of America before heading south to Rochester. Praise God for a great day today!

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Getting ready for the trip!

2008-06-18T08:49:00.012-05:00

Well, here it is a few days before the trip and the girls and I are beginning to get into a Summer routine, finally. Last week was fun but hectic with VBS and Sports Camp. This week we have cleaned a bit, played a bit, and rested. I am taking some classes at night this Summer to get my Visual Impairment Endorsement. That includes Braille class. WOW! That about says it. We are excited about the trip. I had a talk with Kyla yesterday about what was going to take place starting next Monday at Mayo. She was a little teary and that is understandable. She still amazes me with her spunk and determination. She is a brave girl! We are working on Psalm 46:1 this week. Kyla and I decided that we need God to be our "refuge and strength" all the time, but next week at Mayo might be some of our "times of trouble." :)
Love you all!
SC

Here are a few pics from the backyard...

Mission Quito

2008-06-15T21:48:00.003-05:00

I spent June 1-8 on a mission trip to Quito, Ecuador. This has nothing to do with Kyla, but if you are interested, you can check out our blog from the trip by going to http://www.missionquito.wordpress.com/ and clicking on Team Deportes. It was an incredible trip.
nc

Mayo Trip Upcoming

2008-06-15T21:37:00.003-05:00

We are preparing to go back to the Mayo Clinic. Sabrina’s parents and sister are traveling with us as we are all flying to Minneapolis on Saturday. We’ll drive down to Rochester on Sunday and will start our appointments at Mayo a week from tomorrow. Kyla is scheduled to have an EMG on Monday, June 23 at 6:45 am and will meet with Dr. Andrew Engel later that day at 1:15 pm. On Tuesday, she has an Electrocardiogram at 8:20, a chest X-ray at 9, blood tests at 9:30, and she will also get to pee in a cup for a urine specimen. On Wed., she has an EEG at 9:30 and an appointment with Dr. Duygu Selcen at 1. We fly home on Thursday.

My prayer for this trip is that Kyla's tests will all be fine and that she will get to start a new medication called 3,4 DAP. This medication has been known to cause seizures, so a clear EEG is a must. Also, I pray that if she gets to take the medication, that it will not cause seizures. On the one hand, Kyla's quality of life is great now, so we're hesitant to mess with what she has going on now. The other side of it is that if there is anything we can do as parents to improve her strength and improve her quality of life, we want to do that. So, we're praying for wisdom and guidance and discernment as we go.
nc

VBS & Sports Camp

2008-06-15T20:56:00.005-05:00

Kyla had a big week last week, attending Vacation Bible School and Faith Sports Camp at our church. She started every morning at 8 and lasted everyday until 5 pm. For a "normal" child, VBS and Sports Camp is a long week, and it was especially tiring for Kyla. But she did incredibly well. She was tired when we got home everyday, but she bounced back well. She also really enjoyed learning Bible verses, singing songs, and hanging out with friends. In Sports Camp, she learned to dribble a basketball, did well hitting a baseball, and showed great improvement in all the sports by the end of the week. We haven't played a lot of sports with Kyla because they don't come easy to her and we all get frustrated too easily. Sports Camp was a good opportunity for her to have fun playing and learning. Kyla will never be a star athlete, but I do want her to learn to have fun being active and playing. As she gets older, I want her to make choices to be active and have fun playing games and sports and exercising. This was a great week for her because she just had fun being active and it didn't bring her down.
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Memorial Day Fun

2008-05-27T23:22:00.003-05:00

Kyla had some friends over on Memorial Day to test out my patch job on my church's water slide. She had a blast sliding, while Laura enjoyed playing in the kiddie pool.
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