1:21 am

Not the text I want at 1:21 in the morning.  Well, not at any time really.  They were taking Lara in for a ct scan.  She was not responding her usual way, dilated pupils, slurry speech (to her already slurry speech).  So off she went.  Again...we wait.  Have I mentioned I hate waiting? (and that it is genetic?)

She comes up...no ventilator...no feeding tube.  Doc says she's ok.  Phew.  I know they have said so many times there will be these little scares, but man, they sure don't seem little at the time.  7:30 this morning OT came again.  She sat in the chair again, brushed her teeth again, more exercises.  She seemed to be getting better at those basics.  No where near how we normally do it, but hey, we'll take any kind of improvement.

So tired today.  Poor thing she wants some good sleep.  She did do a swallow evaluation today.  Got passed to eat mushed up chunks...yay for thickened chicken soup, mashed potatoes and gravy.  Still no to the "lemon lime happiness".  Her pneumonia is giving her a kickin' with trying to get that fluid out of her lungs.  She did a few sips of apple juice.  Regular and not the nectar thick kind, but no, not ready.  Poor girl yesterday when we were filling out a poster for her room she said one of the things for her favorite foods was ice chips.  We got a good giggle.  I don't think she will ever want to see another ice chip when she gets out of here.

She does really well for a while with being coherent, but then she will have her moments that bring us back down.  Either hallucinating, or conversations about weird things.  She asked the PT gal today if their checks had come.  "Checks?"  "Yeah, our pay checks."  "Oh no we get paid on every other Friday."  "Oh."  Mom says, "Why were you asking about their checks?"  "Because I want to get paid."  "For what?"  "I get paid to be here."

Dad had a nervous moment of Lara not recognizing him.  She looked at him and was calling him Tommy.  So he had to get closer to her face and say, "Who am I?"  "Oh, you're dad.  I thought you were Tommy Howard."  "Tommy Howard?"  "Yeah, you know, Tanya" as she points up to the side by where her nurse is.  "No Lara, that's Janine."  "No Tanya" pointing again up over her shoulder.  Dad said, "No, Lara, that is your nurse Janine.  Tanya's not in here."  "Oh well she told me she would be here."  I can't imagine having that moment of panic of my child not recognizing me.  Scary moment.  (No offense to Tommy Howard :) ).

PT came later in the afternoon.  Still Lara was just so exhausted.  When she is awake and coherent she can be pretty strong.  Having the rough night she had and an early session with OT she was just still so tired.  A little more with her shuffle today, not sure when I would call it a real step.

They did tell us they usually know by the 2 week mark if they have to keep the drain in or if they will have to put a shunt in.  So we are about day 9 I think.  But it all kinda runs into one big long day, so don't quote me on the 9 part.  The drain now is probably going to stay at least until Tuesday and then we'll see!  Anything past that and the risk of infection goes up.

Tomorrow is a new day with renewed hope.  Hoping she blows em all out of the water.