Sunday, July 26, 2009

No Rest For The Weary

Therapy. That is where I have landed. I have fought it and put it off despite Kenneth's multiple requests that I go. But finally, it became crystal clear to me that this is real and it is not going away. The longer I refuse to face the pain and pretend I am OK, the longer it will take to find some healing. I have pretended for the past 13-14 months since Anna's diagnosis that I am OK for the most part. And I am, some days. Other days I am not. So therapy it is, and I actually left my first session feeling a little better. I look forward to going back this week. Anna had speech on Thursday instead of Monday because Brad (the speech therapist) had strep and was kind enough not to share it with us. Thanks Brad! Anna was much more attentive. We worked mostly on the "b" sound. Anna did not really ever seem to get it during therapy but this morning while I was sleeping she got right up in my face and said "Boo!" I was surprised on so many levels and thrilled to hear the use of the "b." Brad says Anna's main communication will be verbal but that it is going to take us awhile to get there. He is also teaching her signs and she is using those more and more. I think she is starting to get the connection between expressing what she wants and getting what she wants. She has been not sleeping again despite med increases. The other night she was awake for the 3rd or 4th hour and was able to sign to me that she wanted some milk. Her not sleeping is different now than before. Before she would wake and then go back to sleep and wake and go back to sleep all night about every 2 hours. She would be up for about 15-20 minutes each time. Now she wakes somewhere between 1-2am and stays awake until 4-5am. We are exhausted, no doubt, but at least we had a couple of months of sleep instead of the straight 17 months of no sleep we had before. We are handling it OK for now, but I do not know how long that will last. The neurologist's next step is to stop the Tranxene and try Trazadone. I am not sure if I am OK with the Trazadone. I cannot really explain why I am not OK with it, I just have my reservations. We will continue on with the Tranxene and melatonin for now and hope this is just a phase that will pass. At least when she is awake she is happy. I know it could be worse! (But it could be better too!!)

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