Christmas Morning 08

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

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

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

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

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

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

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

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

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

SC

New Beginnings

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

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

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

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

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

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

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

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

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

Medicine Update

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

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

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

Here are some pictures from last Friday.

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

It's in the eyes

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

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.

SC