A final meeting with Dr. Engel and Dr. Selcen

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.