Wednesday, March 28, 2012
Sunday, March 25, 2012
Friday, March 23, 2012
DFA is killing the blog at the end of April. Suggesting we join them on facebook or tweeter. . . .
practice tweets they were, I saved them to pester a tweeety bird poet friend, lol
By Phil Specht on Mar 23, 2012
- the intolerable half load of 140
By Phil Specht on Mar 23, 2012
burdened beast of speech betrayed
truncated,voided
for no two ideas
essential for debate to be held half hitch
join
but half hitched
topple
~~~~~~~~~~~~~~~
corner gps found
blackberry bound
could be friends almost meet
had eyes left gaze of tiny screen
thumbs quiet
index finger salute to Jobs
goodbye
~~~~~~~~~~~~~~~~~~~~~
trees the right height
thrush throat
morn to be born
territory but no mate
no nest, first melody
melody tableau
warbler tree high
lark meadow low
Posted by puddle at 3/23/2012 07:02:00 pm 0 comments
Okay...now that I have calmed down the situation is not as bad as I thought.
By the time I knew Ally's button had fallen out, it was too late to put another one in.
In reality we have not used her button very much in the last couple of months. If she does a good enough job eating, we have been letting her sleep without her night time feeds. We keep track of her blood sugar every once in a while, and they are always good, even when she has not had her feeds.
Daddy and I discussed having the button taken out at her next set of scans (which are in just a few weeks). It looks like Ally made the decision for us. I was mostly freaked out because I had not mentally prepared myself or Ally for the button to actually be out...it has been our blood sugar safety net, and we will still need to talk to the endocrinologist about low blood sugars. The emotional upheaval (on my part...Ally is completely fine with the situation) has passed, and we are looking forward to this new, unbuttoned Ally.
The doctor was fine with letting it close up, and just told us to put a band-aid over the hole. By the next morning the hole was completely closed up on her stomach. We will be cautious with it for the next week or so.
Ally has promised to step up her eating...our goal is for her to be 30 pounds by the end of the school year (she is hovering around 27 right now). Of course, as soon as she hits 30 pounds we will up the goal to 35, but she doesn't need to know that right now!
So, it looks like everything will be ok...on the up side, she no longer has to do the CT scan, so she won't have to drink the yucky liquid (we have always put it through her tubie, to avoid the yucky taste). There is always a silver lining....plus, Ally is REALLY happy her button is gone; she is starting to realize no one else has one, and there is something "different" about her...not sure how I feel about that.
Okay...that's all for now. Nothing exciting coming up. I will post if we have any new information; our next thing on the horizon is an MIBG scan sometime in April.
Happy Spring!
Posted by puddle at 3/23/2012 04:05:00 pm 0 comments
Thursday, March 22, 2012
Today ~~
Bloodroot
The first Redbud
Pears, plums, cherries, almonds, forsythia, yellow and white
The second day of spring, and 80 degrees
Posted by puddle at 3/22/2012 08:52:00 pm 0 comments
Wednesday, March 21, 2012 8:25 PM, EDT
So....this evening Ally and I went to my school for Kindergarten Math Night. We spent a wonderful hour with the K kids, then helped to clean up. We finished it off with a 45 minute drive home. We spend about 20 minutes having a bedtime snack and coloring....at which point Ally heads to the bathroom to use the potty before bed. This is the time (at least an hour too late) that she tells me her mic-key button fell out at my school!!!!!!!
WHAT?!?!?!
Yup....her feeding tube button fell out and she didn't tell me! By the time I knew about it the hole was closed up...so no more button for Ally!
I am at a loss for words.
Posted by puddle at 3/22/2012 05:03:00 am 0 comments
Tuesday, March 20, 2012
On the last day of Winter, the Universe gave to me:
One tigertail butterfly
Two blue skippers
The song of one Carolina Wren
A handful of Coltsfoot
And one happy peeper
Posted by puddle at 3/20/2012 07:49:00 pm 2 comments
Vernal Equinox ~~ Tuesday, March 20, 1:14 a.m. EDT
Spring Season begins in Northern Hemisphere of Earth
Posted by puddle at 3/20/2012 01:14:00 am 0 comments
Monday, March 19, 2012
Monday, March 19, 2012 8:29 PM, EDT
I chatted briefly with Ally's NH oncologist today. She has been in contact with Ally's NYC oncologist. He feels stopping all treatment at this point would be acceptable. We are a bit nervous about that, and our NH oncologist understands our feelings. There is a delicate balance we need to perform to keep the neuroblastoma away, but not have horrible side effects or long term issues. So.....Ally is due for scans (now just the MIBG) in April. At that point we will sit down with the NH oncologist and see what our options are.
This week Ally and I are on our own; Daddy is in Texas for training. He will be back on Saturday. We have plans for almost every night this week...yeah!
That's it for now!
Posted by puddle at 3/19/2012 10:29:00 pm 0 comments
Again. Exactly. (Yay!)
Saturday, March 19, 2011
FIRST PEEPERS OF THE YEAR!! TONIGHT. RIGHT THIS MINUTE!! oh joy
Posted by puddle at 3/19/2011 07:19:00 PM
Posted by puddle at 3/19/2012 08:40:00 pm 0 comments
Sunday, March 18, 2012
Not a good day. Starting with the paint.
The bathroom floor, and the kitchen floor are now paint free. Not so the cat, several rugs, many towels, and the floor in the future studio. At least it's all dry now, so there won't be further tracking. Feel worst about the blue bottom cat. But I swear I couldn't think of anything else to do. (He got wiped. Several times. But a bath is out of the question.)
And no. Beau played NO part in any of this. All courtesy of the cat. And maybe my son. But who knew that stacking paint cans on stools could be so dangerous?
The gist is Stevie had one of his fits overnight, knocked down something that knocked over the stool and the paint cans which came open on hitting the ground, and then. . . . then began one helluva day.
Posted by puddle at 3/18/2012 10:41:00 pm 0 comments
Saturday, March 17, 2012
News on the Mountain
We have wolves!
Pete talked about
seeing one, tawny,
yellow eyes, instead
of a brindle back,
tan, beautiful.
He saw him standing
on a ridge.
We have wolves!
According to Dee
who works in wildlife
they have come down
from Yellowstone.
There is a path
through public lands
straight from there
to here.
We have wolves!
Now in this mountain
community where
mining, logging,
even bison roamed,
though that didn't
work out too well.
Thunder spooked
the herd who ran
pell-mell down the mountain
all the way to Johnstown
tearing up fences
from here to there.
Old Hyatt the rancher
had to pay
for their repair, and
he subsequently decided
maybe bison weren't
the way to get rich.
We have Wolves!
We sit at the dinner table
grinning,
all of us, as if
to say, something
has been put right,
brought back where
it belonged, and
we had shared in the guilt
for its being gone.
Not that we would
mingle or feel
altogether amicable
with wolves
for they are predators
(like us)
but knowing they
are here is comforting
is right and just.
We so seek
to make the world
in the image we imagine
of ourselves
of brightness
and niceness
tamed and controlled.
While the world
is better with
a wholeness
with the beauty
and fierceness
and brilliance
of wolves.
And we howl inside ourselves
grateful, awed
with the knowledge
there is a beautiful wolf
(Pete said he'd go out
to see it in his underwear)
somewhere here
on Storm Mountain.
~~ Pat Maslowski
Posted by puddle at 3/17/2012 02:11:00 pm 0 comments
Wednesday, March 14, 2012
Tuesday, March 13, 2012
Coltsfoot day!! (Had to go back six years to get a spring this early!)
Monday, March 13, 2006
Posted by puddle at 3/13/2012 06:26:00 pm 0 comments
Sunday, March 11, 2012
Monsters of War
gunpowder and dynamite
trigger finger itch
dead child dead
dead child crying
to ears that no longer hear
any but voices that never leave the head
By Phil Specht on Mar 11, 2012
Posted by puddle at 3/11/2012 08:51:00 pm 0 comments
NASA
Moonlit Aurora Borealis
amniotic sky
reflections of a lost twin
ever circling
tide or maternal heartbeat
as the seas rise and fall
to your memory
when you too, alive
shared water ...
water to put out the prairie fire
in the northern sky
By Phil Specht on Mar 11, 2012
Posted by puddle at 3/11/2012 07:31:00 pm 1 comments
Saturday, March 10, 2012
Saturday, March 10, 2012 5:28 PM, EST
Still no word on next steps.
But...Ally lost her first tooth today!
Posted by puddle at 3/10/2012 05:55:00 pm 0 comments
Thursday, March 08, 2012
Thursday, March 01, 2012
Thursday, March 1, 2012 1:17 PM, EST
Ally is HAMA positive. This is a bit disappointing, as we are pretty sure this was her last chance for a final dose of 3f8. There is a little confusion about the actual end date of the protocol, so we have a call/e-mail in to the NYC doctors. Hopefully we will know by tomorrow.
Regardless, we are not sure what our next steps will be. At some point NYC wants us to come back so they can do their post 3f8 workup on her. This would involve a set of scans, blood tests and various other procedures, to see how her body is functioning, after 4 years of cancer treatment....a bit daunting to think about!
Other than that, we have already been out in the snow once today, with plans to play/shovel again. It is nice to finally have snow on the ground!
Everyone is healthy again. The antibiotics have really helped Ally's hearing! This is great, I was getting tired of talking loudly and repeating myself.
As soon as I know what our next steps are I will let you know!
Posted by puddle at 3/01/2012 02:22:00 pm 0 comments
Indy
Today I picked up a rock that looked like an arrowhead
(out of habit I'm always looking)
but it was just a piece of stone
that if worked had been rejected.
When my son was young (but past the age of needing
the occasional lift on the shoulders) we would hike the hills
in search of artifacts and poke around the "Indian caves."
He became "Indy, boy archeologist;" and
I earned the title "bogus archeologist;"
because by then he had studied enough to know woodland tribes
never lived in rock shelters, even as I estimated 3 feet of time-soil
lay over the ashes of a campfire built as the glaciers passed to the west
and remained sure the spring too handy and the cave too protected
not to invite habitation to wanderers in a strange land.
So now that his spirit inhabits the same space
time continuum as the first nation people's ancestors
I would like to ask him to settle the argument.
Was I right to feel their presence under the bluff?
Or now his with the red tail's cry?
I do know a young "Indiana Jones" is with me
every time I bend to hold the past in my hand.
By Phil Specht on Mar 28, 2012