Friday night

This week we have had lots of forward steps, although today wasn't so great.  I know there will be days like today and I just need to accept they are part of the process-but I want EVERY day to be better and when that doesn't happen it's hard.   She's got really frustrated in therapy today and started to cry.  I can't stand it when I see how overwhelmed and sad she gets.  They were trying to get her to do a puzzle and she just couldn't make her hands do what she wanted.  Later I tried to tell her how much better they are working than they were a few weeks ago, but she can't remember that.  She's just comparing it to what normal hands are supposed to be doing, and she feels so overwhelmed at how far she has to go.
The doctors have continued to give her a lot of nutrition through her NG tube.  It's important I know-they are trying to give her all the right things so her kidneys will keep working and she can build up her strength.  But it's way too much and so she feels nauseated much of the time, and then of course she doesn't want to eat.  So today she threw up so hard the tube came all the way up from her stomach into her mouth.  The nurse quickly pulled it out through her nose. Pretty gross, but she was happy to have it out.  Well, that joy didn't last long because then they said they needed to put it back in.  She had two panic attacks just thinking about it and I could see that after her discouraging day she was at the end of her rope.  The night nurse agreed with me so we spent a lot of time trying to convince the doctors to leave it out until at least tomorrow.  And they did.  So I pray they can leave it out and that she'll be able to eat and drink enough to keep all her organs (and her drs.) happy!
She had lots of good moments today too.  She had lots of visits from people she loves-and that really cheered her up.  Our good friends from our ward came to see her and brought lots of nice notes and surprises from good friends.  She also got some sweet letters in the mail, so we spent part of the afternoon reading all her notes and letters and it cheered her up considerably.  She started saying today that she just wants to go home.  I couldn't being myself to tell her how much longer we are going to be here.  Sometimes it starts to feel like we are in jail, and even more so for Hannah because she has been pretty confined to her room.  Now that she is free from so many I.V's and tubes, we will have to get her out of her room more.  Therapy will be keeping her more and more occupied too, so that's good.
She has lots of family and friends coming this weekend which should make her happy.  We sure appreciate all of you for taking the time to come visit or to write her an email or note.  It's always good for her to be reminded that she is very loved.  So thank you-we feel blessed!