one step at a time

this morning she took a little walk!

really

step by step

the nurses thought that she could do it

so when they got her up to move her to her chair

-they took her for a little walk

'round her room and to the door

a little peek outside then back

she did really well they said

and now that everybody has seen her do that

they've all been in to see her and talk to her

she said 'can i get some sleep now?'

i guess so, being up all night texting her dad


little baby steps...

changes in her feed tube

changes in her oxygen levels and the amount of pressure

changes in her dialysis (she's on again today)


they are all very happy how she's doing

her strength, fortitude, patience and steadfastness

are all a miracle and proves the power of your prayers

thank you

past your bedtime

so here we are

texting back and forth and back and forth

and it' 2 in the morning back there in pittsburgh


as you know...

you can't sleep in the hospital, only when they knock you out

so we're texting about how good she's doing

and the red sox clubbering the rockies

and how happy she is about getting off her 'flolan' pump


ya know, she's been hooked up to a pump

day and night for the last 5 years

and this medicine was doing lots more than keeping her alive

it had lots of side effects that weren't good


all gone


and she's thrilled

she's so sweet

laying in bed, 2am, texting her dad

i couldn't be more blessed

but, i can't wait to see what The Almighty will do NEXT

another day

kim, her nurse said:

she's (still) responding well to the rejection treatments

they gave her 'a gram' of steriods yesterday and again today


she said her spirits are good

sitting up in a chair and listening to her iPod

this is great!

she's been talking to her nurse about tonight's big game

GAME 1


well, that's great, let's hope that these treatments work

i'll post again when there's a change

(or if her red sox win)

a little smoother ride

the nurse just said she's doing sooo much better

and she said it was sooo much enthusiasm


so tonight's ride will be a little smoother ride

she said she's been responding nicely to her treatments

well enough to cut down on her oxygen and to

start the weaning off her breathing machine again

wow! this is great news, thank christ!


she said she's doing and looking great

feeling good enough to get on the computer and

do a little facebook and some im-ing


that's the amazing thing about this kid

she's such a good patient and so strong

and can bounce back so good


and that's the amazing thing about prayer

it works

a bump in the road

this morning the nurse said she's in a little bit of trouble

they had to do another 'bronc' on her

-that's where they go in and clean out her lungs

she's not getting enough oxygen


more bad news


the biopsy on her new lungs showed 'mild rejection'

so they've started her on steriods and anti-rejection drugs

these are the drugs that knock the heck out of you

she's on 100% oxygen now and also nitric oxycide


she's in a battle but she's in real good hands


say your prayers


all have said that this ride IS a roller coaster

ups and downs

i don't like the downs

major step

well we got by (to me) a major step

today she had her first lung biopsy

doesn't that just sound scary

but she did fine, (results in a couple days)

afterwards she texted me again

and again it's about her red sox

after a little baseball banter, i asked how she's doing

she replied "I'm tired and any activiities kill me"

there you go -an update directly from her

she's so cute

and so strong and brave, just a brave little kid

(i mean young lady)

a little stand-up

yes, she's happy

and i'm happy too


the nurses said this morning she's doing real good

she knows the red sox won and

she STOOD UP to get in a chair next to her bed

wow

still has a low grade fever, but they're not worried about that

(not so much)


today they are taking her for a 'bronc'

-that's where they stick a long tube down her trach tube and

clean her lungs out

also they are going to do a biopsy of her lungs!!!

'the removal for diagnostic study of a piece of tissue from a living body'

they said that this is normal -about two weeks after a transplant

they go in a get some and test it and see if her body

is rejecting her new lungs


to me this is BIG, the nurse said

'it only takes a little while and have no worries'

...


keep saying your prayers