Well, we arrived in Indy on Wednesday early enough to run Abby all around a motel room and completely wear her out! It worked! We talked all day about the pretty buttons they were going to put in her hair and that they would be taking a picture of her sleeping... well, she loved the idea! She did well. However, It broke my heart. She rolled over just before going to sleep, grabbed my hand and in the most sweetest voice I have ever heard asked "Mommy, am I OK?" I wanted to just grab her up and cry. I never realized how much she is in tune with every thing. We have been so worried about every thing with bubby and the possibility of her having this, I never stopped to realize that she may be understanding those fears. Well, we talked for a little bit and I told her that she was going to be fine because mommy and daddy love her and Jesus is right there in her heart! She smiled and squeezed my hand and went right to sleep! I wish that I could have innocence and faith that she has. That little girl loves Jesus with all her heart and she KNOWS that he takes care of her. Bubby is feeling a bit better. His diarrhea seems to be clearing on its own... THANKFULLY! We saw Neuro today. They are going to schedule him for a 24 hr. EEG to see if they can figure out what is causing the tremors that he is having. The doc is not sure that it is a seizure, so he's going to do this just to make sure it isn't anything neurological and then if it isn't, we have it on video and they can figure it all out. During this time, they are going to do some blood levels on him to see if his sugar is out of whack or if it is OK. Also, they are going to do another urine screening on him to see if they could catch something genetically for his disease. They have also said that within 2-3 mths, they will be sending us to Atlanta to have Joey's muscle biopsy done. He said that if Joey were older and able to voice what was going on, they'd wait and see... but with his age, the more we can find out, the better the chances are for him to have a smoother run at life. So, off we'll go!
The kids enjoyed visiting with Aleyna today. (bubby's dietitian) Abby saw her and absolutely ran to her! Bubby, well, he BELLY crawled to her! Go Joey! She'll just have to come home with us because we tried all night to get him to do it again... I guess we really are Mr. & Mrs. Chopped liver! =) On an extremely funny note... a lady in the elevator looked at bubby and goes "Oh my! What fat cheeks you have!" Then, she looked at Abby and grinned stating "You have them too!" I was waiting nervously to see who was next and low and behold she looks at Jeff and says "Now I see where they got them! They got them from daddy! Look at those cheeks!" Ha!!! Oh my! Absolutely made my day! I think I chuckled in my sleep about it last night!
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