Another friday in paradise...

I waited around after the CT and apparently I don't get to know the results of it until the morning.

I did find out from a nurse that they are planning on inserting a permanent shunt into Sara's brain, as she apparently cannot circulate the fluid to elimination the normal way.

When I arrived in her room this afternoon she was down at CT. I saw a letter up on her board for me - left by the social worker and neurologist. It is the letter I need to start applying for any benefits and disability for Sara. I knew it was coming, and it doesn't say anything they haven't said out loud to me before, but it stung to see it in writing. ...permanentally disabled... ...24 hour care for life... thank god they didn't use the q-word, or I think I may have just passed out. Luckily, about the time my head really started reeling, the nurse and transport showed up with my sweet girl.

She had her eyes open, was following peoples actions and was communicative when addressed. I couldn't wait to look into her face. I kept getting in the way (sorry nurses...that's my baby girl...). Once they had her settled I was able to start talking to her, stroking her hair, taking inventory of her limbs and fingers and toes...

I noticed while touching her that she's starting to lose weight and muscle tone. It is completely understandable and I guess normal for someone who has been confined to a bed for over three weeks. Still, the feeling that my baby is "wasting away" kinda got me a little. But, then I had to remind myself that she is overweight to begin with and will lose weight down to a more normal weight based on her diet. That's a good thing. The muscle tone...well, that can't be helped while she cannot move. We stretch her and flex her joints and such, but tone comes from weight bearing exercise - and she just can't do that yet. I'm going to have to learn what I can physically do to help her.

There is so much to do...so much to think about. The hospital told me that she can't start any therapy until she is better, and cannot go to the intensive therapy hospital until she can withstand 3 hours of therapy per day. I don't get how she's going to go from laying in the bed to magically able to participate in 3 hours of therapy a day...but I guess they'll tell me. I'm just worried that they won't see anything "significant" and not help her/push her. She's had all tubes out of her mouth for a few days and I don't know why noone is starting to help her re-learn how to swallow... She has to learn that again, so that she can keep her own airway cleared. And, besides, I told her that once she could swallow again, i'd bring her nutella and some orange juice - two of her favorite flavors - and maybe a Sobe Courage (her favorite flavor, ironically...)

She got pretty tired, and I helped them turn her and get ready to sleep. Put on a CD for her and turned down the lights. As I was getting ready to leave I watched her for a few minutes. I love to watch my children sleep. If it wasn't for the aspen collar on her neck, and the steady sound of the respirator, it could be her sleeping any other night. Beautiful, peaceful, pink and warm. Those graceful fingers atop her sheet, freckled nose beneath her long eyelashes.

I hope she dreams... dreams of herself like a phoenix rising...