So it has been a few days since I have done a post. Thursday and Friday left me by the phone again with no call to get an actual appointment on the calendar even though Dr. Sullivan said he would see us the last week of July. So I guess that means I hit the phone lines again Monday morning.
I have been told that for those that are reading the blog it helps to know "where I am". Let me just say...somewhere down in a hole. At least that's what it feels like at times right now. I just can't really put it all in words. I feel like we are living life second to second waiting for "the other shoe to drop" for lack of a better expression. Constantly watching to see if Raegan will have another episode. We were so excited that she went two days without anything that we could see. That is until last night, when George was in the playroom with the girls and I heard Aaaannnneeettteee.....there is just a different tone now when we call one another to be witness to an episode. It sucks, frankly. Tonight was no different. We were in our room. George on the bed with Carley, my back to Raegan at the computer and then I "felt" it. I turned around and there she was, blank sad face, standing still, eyes darted to the side just for a moment, and then....the chin. UGH! So then the counting begins, watch the clock, are her limbs twitching or just the chin? This time she only wanted to crawl in my lap and sit. I suspect she was "feeling" it more since she kept saying she needed to go to the hos-a-bill (she sounds too cute), I told her she didn't need to go to the hos-a-bill but she just needed to let momma hold her. The chins only lasted about three minutes but it took just over 15 before she would "snap" out of it and laugh at daddy which is how we tend to gauge where she is. Then she was off and running, playing with Carley all the while George and I just look at each other and try to guess what now.
People are always saying what do you need or just let me know. I can say it is the random calls to say "Hey I'm thinking about you" or the random card in the mail or the facebook message on my wall. Better yet the unspoken prayer for us when we come to mind. I know we still have a journey ahead of us but I for one am SO grateful for the family and friends that are standing with us through this.
Blessings to you all!!!
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