on her own, all day!

her nurse told me she's been

on the 'trach mask' all day

from 8am to 5pm

-breathing on her own -with her new lungs

all day

this is good and lots of work

so, at the same time they gave her dialysis

and sucked out a liter of fluid from her blood

that combo is a full days work

she said they've just settled her down for the evening

and hopefully (as we always are) she'll get some rest


what a hard working fighter

she's trying so hard

and working so hard

and now god's taking it a little easier on her


for her, the battle continues!

the fight is on!


for the rest of us the fight is on -our knees

(keep saying your prayers, please!)

big thanks for the big event

There are so many times, mainly late nights,

when I feel so alone in this battle that I face

-in the war that my daughter is facing.

But at the event last night at Smooth's,

I felt so encouraged and loved that I know this battle is being fought

-with an army full of people who care so deeply about

me, my daughter and just plain ol' people who need a hand.

The heart-felt love and sense of compassion was overwhelming.

The event for my daughter was not a success for the amount of cash that it raised

but for the out pouring of true love that it conveyed.

CarePage Update

Acacia is trying her hardest to breathe on her own.
She did about 1 1/2 hours on the trach mask yesterday and 3 hours today.
They put another line into her g tube as her stomach can not handle anything
-so now the feeding goes right to her intestines, she still is nauseous and having other issues
-but it seems to be better.
They took her off the 24/7 dialysis and now she is on the three hour one three times a week.
They took the arterial catheter out of her leg last night,
which is another step in the right direction.

Compared to a week ago, things are so much better. Such a long road.
She asked again today on her chalk board about Christmas, and then started to cry.
It is all so overwhelming. I won't answer her as I don't want to disappoint her,
so we will take it a moment at a time.

Posted on November 7th from Acacia's CarePage Updates -Children's Hospital Boston

sweet, sweet music

early this morning i took a chance and texted her

then my house filled with sweet music

the music of my sweet daughter's voice

'Smile, You've Got Mail'

over and over again


she said that she feels 'ok' and that she's on the mask

-that's the 'trach mask' that they are using to wean her

-having her breath on her own, without the ventilator

it's work, -work that must be done

she told me she's watching tv and 'chillin''

i told her about tonight's Big Event here in Long Beach

she said 'cool'

what else do teenagers say?


so, great

who needs nurses for details

when you've got a cell phone and a sweetheart

back-off, baby!

this afternoon's report was good

her nurse said that she's

back-off of 24/7 dialysis

back-off the dual ventilator

back-off heavy sedation

back-off heavy pain medication

yeah!

and the x-ray of her problem

-the air trapped around her heart

'seems' to be dissapating (more)


so with this morning's texts

and this afternoon's report

..we can go into her big fundraiser tomorrow night

with a little more hope

and

as you know

hope is what we have

what a wonderful age we're in

i was awakened this morning at 4am by acacia's voice

"Smile, You've Got Mail!"

-that's the sound my phone makes when i get a text

and (praise god) there was the message

'morning'

-from a medically induced coma to a text on a cell phone

ain't life great?

we text ed back and forth

she said she felt fine, but can't handle the feeding tube

i told her 'ya gotta eat'

i asked if she's getting skinny, she said 'yeahhh'

ya see, like her father (and his cars)

-she's always had trouble with a spare tire


so, (for this morning) 'she's wide awake'

i told her i loved her

and she did the same

-that's all i need


the wheel goes round and round

and (for right now anyway) we're at the top!