Ups and Downs

It has been so overwhelming to see and hear of people all over the country praying for our sweet girl.  Thank you, thank you!

She continues to suffer with the sores in her mouth, which are now spreading to the corners and insides of her lips.  Her tongue looks MUCH better, but she now seems to have difficulty swallowing, so whatever is in there has worked towards the back of her throat and down into the esophageal area.  The past couple of days, she has been drinking great and that's what gotten us through the not eating for over a week. Yesterday we thought we were heading upward because she actually ate some bites of food without spitting it out! But, today, she has not eaten and even refuses to drink and holds her mouth in pain, pointing inside. She must think that either we don't understand her...OR, that we are total idiots and can't find any way to help her.  As we head out for dinner, you can hear her sigh,  "Oh, here we go again...what fools they are!"

She makes it through each miserable mealtime with a new game...she calls it "The Granny Game"  You pick and choose a ton of food, loading up a plate, but when you get to the table, you politely refuse each item, and instead, feed it to everyone at the table, stuffing them with everything on your plate!  It really is a sweet game and gesture, and I like to watch her play it...but wow, she is really insistent on you eating the food. You hate to reject for fear of hurting her feelings.  I let her pick what looks yummy, and if I don't like it when she's feeding it to me, I just have a taste, make a yucky face, and she'll snatch it back from me and toss it to the discard pile while shaking her head "no"... looking at me with concern, as if to say, "Good grief, it's gross? For heaven's sake then, don't eat it!"

Vivian is an old soul...a watcher, a thinker, a caretaker.  She acts like she's seen it all before and here to teach us something.  Tonight she fed me fettuccine, but had a difficult time wrapping it around the fork.  She was so careful that I get every bite and would swipe the drips off my chin and put them back into my mouth. She has definitely fed babies before!  However, in some ways, she is just a baby herself.  Like right now, she is dangling from my neck, crying her eyes out because she wants me to lay down beside her.

We pack up our bags tomorrow and fly out on Saturday.  I think we will make it home and already have plans for the doctor on Sunday.  Please continue to pray that she will keep drinking.  Her skin is starting to look papery, like her little face is wrapped in tissue.  No amount of Clinique Dramatically Different Moisturizing Lotion will help, it is dryness from the inside.  She's getting sick of Pedialyte....2 more days little one!