Hello again.  Today is the last full day for us in the hospital again.  Weekends here are strange to me.   Meaghan and I are excited to get back home.  As I am sure the rest of you are too.  As excited as I am I still have to caution everyone.  On the outside Meaghan looks great but on the inside she is a huge mess.  Her lungs are full of thick sticky mucus and a lot of the airways have collapsed.  The numerous medications have taken over her GI tract and now even her skin.  There are teams of people who have to coordinate the effort to get her better.  Her regular docs, the pulomonologists, infectious disease docs (for her rare, slow growing hard to treat lung infection), eye specialists, nutritionists, respiratory and physical therapists.  What will decrease the infection and kill the bug while keeping in mind what's right for Meaghan are a very delicate balancing act.  She needs long term, round the clock meds and tons of support.

I am so proud of her.  She is the strongest, bravest girl I know.  We played the game you see in the picture last night and her answers to the hospital related questions choked me right up.  Through all of this she has learned to verbalize her feelings about anxiety, fear and pain.  She is able to share them with me, her doctors and nurses and that has the whole floor talking about the cutest, sweetest girl they've met.  Thank you God, she's mine.

Jumpin' Monkeys