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!!
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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.
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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.
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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.

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some pictures from last week

Here are some pictures from last Friday.

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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."