Sunday, January 31, 2010

Sunday, January 31, 2010 8:11 PM, EST

Ally's birthday was great!

Tomorrow Ally will get a blood draw. On Friday the doctors told us to be ready to bring her up for a blood transfusion at some point this week. Hopefully it will be later in the week or not at all. Also on Friday one of her oncologists remarked again at how wonderful she thought Ally was doing. She said that some of the other kiddos they see, that have had this surgery, start to look as good as Ally about 4 months out. I can't imagine her being like this for four months. She still will not walk on her own (she can, she just doesn't want to), she must have someone to sit with her and will only tolerate being alone (and by alone, I mean not physically touching her, she needs someone to sit on, not just in the same room) for about 2-5 minutes. She doesn't have much of an appetite and is still puking...which we found out is common for 4-6 weeks after surgery. Ugggghhhh. She is also not interested in her toys very much. She will play with some things for about 5-10 minutes, but then is content to just sit on the couch with someone, sometimes watching tv, sometimes reading books and sometimes just sitting there quietly. We miss old Ally.

On a brighter note Ally LOVES her big girl bed and she slept the whole night through in it last night!

Hopefully not much to report this week.

We head back to NYC the week of school vacation.

Saturday, January 30, 2010

Friday, January 29, 2010

Friday, January 29, 2010 8:13 PM, EST

Today has been a very good day for Ally (if you don't count the 2AM puke).

At work Mommy received s couple of gifts for Ally, both of which she opened and loved! (She can't wait to watch the Dora DVD and she has been playing with the piggy all night.) Mommy also got several cards for Ally. Her teacher friends were very generous and got Ally some gift cards to Toys R Us and Build A Bear, both of which have HUGE stores in NYC! Since we are going back at the end of February and we should have a couple of days free we may wait until then to use them.

When Mommy got home there were lots of cards and 2 packages for Ally. She LOVED the cards! She was also impressed with the animal figurines that came in one of the packages and immediately made them poop! Yippie!
[Note: that package was from listener and listener’s squeeze!] (The second package was the shots we have to start giving her tomorrow....yuck.)

At the hospital Ally was the star of the day. All the nurses and doctors signed a card for Ally and came in to sing her "Happy Birthday". Even though the staff may have thought Ally was scared to death, she truly enjoyed the singing. BEST OF ALL Ally got a HUGE bag of medical supplies!!!!!! This may be her most favorite present ever! She actually sat on the floor and played with the stuff for 20 minutes when she got home.

Today was a good if only this scratchy throat and runny nose would go away.

Happy Birthday to Ally tomorrow!!! It's nice to celebrate something.

Matthew Rothschild highlights this Howard Zinn quote:

“To be hopeful in bad times is not just foolishly romantic. It is based on the fact that human history is a history not only of cruelty, but also of compassion, sacrifice, courage, kindness. What we choose to emphasize in this complex history will determine our lives. If we see only the worst, it destroys our capacity to do something. If we remember those times and places—and there are so many—where people have behaved magnificently, this gives us the energy to act, and at least the possibility of sending this spinning top of a world in a different direction. And if we do act, in however small a way, we don’t have to wait for some grand utopian future. The future is an infinite succession of presents, and to live now as we think human beings should live, in defiance of all that is bad around us, is itself a marvelous victory.”

Howard Zinn

Thursday, January 28, 2010

Thursday, January 28, 2010 6:50 PM, EST may remember I mentioned one of Ally's NYC nurses came down with shingles sometime after treating Ally. This caused us to need to put her on a yucky banana tasting medicine. This medicine also makes kidneys work hard. Ally does not have good kidneys....until today! Her kidney levels were so good that now, instead of this yucky medicine 3 times a day, she has to take it 4. Luckily she only has 2 days left.

The puke issues continue.

The poop issue has resolved!

I have been getting LOTS of e-mails and messages about Ally's birthday. Unfortunately, because of the chemo this week, we are limiting her party to just family. We are hoping to have a party in the spring for Ally's birthday.

Tomorrow is last day of chemo!


Wednesday, January 27, 2010

Wednesday, January 27, 2010 6:34 PM, EST

Ally going to bed early = 4:45AM wake up time.

We are still working on the puke issue. We have now added the fun: it hurts when Ally poops issue.

I think if we can just stick it out through this week of chemo things will get better next week....right?

Tuesday, January 26, 2010

(Just found this!!)

Ally’s Grammy and Grampa wrote, today:

Ally was one happy little girl today to see the NH doctor and her nurses. The relief at being in a familiar place with her people was so obvious.

Even though the Pedi clinic was not open the play room was immediately unlocked for Ally and another little girl. We made numerous trips and even found a Spiderman book.

At 4:20 when the pump beeped and the last medication was done the smile on Ally's face was priceless. Where is a camera when you need one? Ally looked at us and said now we go home and see Mommy, Daddy and Monty.

She amazes us everyday with her strength, courage and ability to make us smile under any circumstances.

Love you lots Ally. Grammy and Grampa

Tuesday, January 26, 2010 6:59 PM, EST

Today Ally did well at the hospital. She did not eat much, but that has always been the case when fluids are running through her IV.

Ally has a team of 3 oncologists at the NH hospital. One of them stopped by today (not her primary oncologist) and said she thought Ally looked really good. Grammy and Grampa said they thought otherwise (as do Mommy and Daddy). The doctor then went on to say that other kiddos that have had this operation did not look as good as Ally does. That makes us feel pretty good; we thought Ally was doing poorly, but apparently she is the rock star we know she is....I should never have doubted.

Anyway, no specifics about puke...I am getting superstitious about specifics and caring bridge. Tonight we started her on a "gentler" formula through her tubie, hoping this will help. We also have a medication we could tell the doctors we want, but we are going to wait and see if this new formula works.

Ally asked to go to bed at 6:00 tonight. She is SO tired she doesn't even want a story. It will be nice when she does want to hear How Do Dinosaurs Say Goodnight? again.

Today's up river view. . . .


Close call


This is what I mean when I say the river's running jade. . . .


a bridge under trubbled water . . . .


. . . .end of the road. . . .


Late update to yesterday's update

Ally knew everyone's name at the hospital today.

Monday, January 25, 2010

Ally, Daddy, and Monty kitty.

Monday, January 25, 2010 7:18 PM, EST

Our weekend went okay. On Friday night we turned Ally's feeding tube on and left it on until she went to the hospital for chemo today. We were hoping this would ease the puke situation, but alas, it did not. She was getting about 40 ounces of pediasure through her tube a day, and puking up about 25-30 ounces each day. Today she weighed in at 21 pounds. The doctors are working on a plan to get Ally's weight back up, and to curtail the puking. Ally's doctor is also being a rockstar and helping us with NYC. The people down there are not our favorites, as they lack basic communication skills. Ally's doctor has been e-mailing like crazy and helping us out tons! Ally started chemo. It will run all 5 days, but luckily she gets to come home each night! Grammy and Grampa report that Ally stayed in her bed all day, but did play with some puzzles and read some books. She also kept tabs of EVERYONE in the hall. She was super excited when her doctor came in with some medical supplies to play with!
Well, that's about it. Ally has no energy, we can't stop her from puking and she is doing chemo this week. All in all she is handling it pretty well.

But then it ends like this:


How to stay mad, lol!?

Looks like it was under the left wheels before it started to recede. . . .


Looking up river


Where the road ends


A River Runs Over It. . . .


Where the river slopes down (to your right) is where the bridge is. . . . then it drops off of the bridge. . . .

Too much of a good thing?


Sunday, January 24, 2010

Water water everywhere. . . .

Just as I was leaving for the store this afternoon, I realized my spring was running again! (I have the hose worked through the handle of a laundry tub among the trees. So I hurried out and back, got my buckets out (and went looking and found three more). I now have fifty five gallons of water cached on my front porch, my twenty gallon keeper is nearly full, and all my dishes are done, and my jacket is washed.

This is riches. . . .

Friday, January 22, 2010

Friday, January 22, 2010 8:12 PM, EST

Today was our first full day back in NH. Mommy and Daddy headed out to work and Ally stayed home with Grammy and Grampa. Even though we are back from NYC there is no time to take a breath. Ally had blood drawn today. Her counts are VERY good (in fact I can't remember a time they were ever this good). So....that means we are going ahead with chemo on Monday.

Originally this chemo was supposed to be just like her last round, but Ally's body is not able to handle that high of a dose, so we are going to give her a round of chemo identical to one of the first rounds she got. The good news about this is: since it is not as intense Ally does not need to be admitted to the hospital. Instead, Grammy and Grampa get to drive Ally to the hospital each morning next week, hang out in a room for 4-5 hours and then drive home!!! Yeah for Grammy and Grampa! (Have we mentioned we love them and couldn't do this without them...both sets of course!)

Also a fun little side note: one of the nurses that cared for Ally in NYC came down with the shingles. This means Ally gets to take new meds to help prevent her from getting them [chicken pox]. Yippie!

Ally has been lacking energy the past few days. She doesn't like to walk, she took 2 naps today and went to bed an hour early. She has lost so much weight, she looks like a skeleton. She pukes up everything (and it seems a little more) she eats and she is an emotional wreck. On top of this we are going to force chemo upon her in 3 days. Hopefully her night time feeds (which have not made her throw up yet) will help put some pounds back on her. We are looking forward to having our playful little bug back; it's been hard watching her make her way through. We need some prayers.

All the (n)ice pics are mine (jjl)

and look enormously better full size. . . . (click 'em!)

Ice, and ice, and ice, and. . . .

Ice. . . .

Ice. . . .

Ice. . . .

Thursday, January 21, 2010

Thursday, January 21, 2010 8:59 PM, EST


Wednesday, January 20, 2010

Wednesday, January 20, 2010 1:37 PM, EST

Today we ventured out to Times Square. We had a shifty Taxi Driver who took the long way there, but it was still a fun taxi ride.
We started at Toys R Us. Ally was impressed with the giant T-Rex and LOVED Spiderman! She also was willing to take a ride on the Ferris Wheel. Lucky us we got the car that looks like a cozy coup. Ally enjoyed that. We then walked around and hit the Hershey's and M&M's stores. We then walked to Rockefeller Center and saw some people skating on the ice. We ended with a super quick walk through FAO Schwartz. Ally was completely tuckered out at this point and we took a much shorter and cheaper taxi ride back to Ronald McDonald House. Ally fell asleep quickly....and woke up 30 minutes later...not a good nap.
Ally is tired most of the time, but we are making her move around more than when she was in the hospital. She is not in any pain, but continues to vomit almost every time she eats. (For now this is okay, and we are supplementing her with tube feeds, which do not cause her to vomit.)
It was nice to see some of the city today. We took lots of pictures, but the internet connection is VERY slow here, so I am going to wait until we get home to upload them.

Tuesday, January 19, 2010

* * * GO ALLY, GO!!!WOW!!! * * *

.\. . *O* . /. . . . . \. . .O . . .
. .\__ || _/ . . . . . . .\__||____
. . . . / \ . . . . . . . . . . .|| . . .
. . . /__ \ . . . . . . . .// .\\ . .
. . . \\ . \\ . . . . . . | | . . \\ .
. . . = . . . = . . . . . = . . . .= .

♡♡♡ Dance! ♡♡♡Dance!♡♡♡ Dance! ♡♡♡

Everybody do the Ally victory dance!

Tuesday, January 19, 2010 11:43 AM, EST

We are out of the hospital

They have sent us back to the Ronald McDonald House. However, we are not allowed to leave the city just yet. They want to see her again Thursday morning for another X-Ray and just a once over of her many scars and wounds.

Ally was able to walk around in the hospital and Daddy carried her back to the Ronald McDonald House. When we got here (around 10:30) we played a little bit, and by 11:30 she was ready for a nap.

We have to go back to the hospital today to get some pain meds (just in case) and we also plan to visit a toy store today.

We are excited to be out of the hospital! Our excitement will only last a few days though, because the doctor down here wants Ally to begin Chemo on Monday. At least we can do that in New Hampshire.

By the feels like it is about 50 degrees here today!

Monday, January 18, 2010

Ally update

Mommy, Ally, Daddy and Ally’s nurse, stopping to see the fish tank on one of Ally’s walks:

Monday, January 18, 2010 5:27 PM, EST

Today has been a day of moving around, little walks and lots of playing. Ally is very talkative today, and although she does not like the moving so much, she is willing to do what we ask. Her surgeon stopped by today and thought she looked good. She is still swollen, but has lost about 2 pounds of water weight over the past 2 days, so they are giving her some meds to help her pee the rest off.

Grampa Schulte left this morning, and Auntie Kelly left yesterday. Ally was super excited to see them, and Mommy and Daddy were very grateful for a break after such a long week.

Lots of Ally walking around time. We have noticed great improvements in her walking and today she did some of it without holding a hand!

We still have not seen Spiderman (and we still don't really know where this whole thing came from) but we have watched MANY Cookie Monster clips on YouTube.

Ally is going to try fish sticks for dinner tonight.

Ally sleeping with her hands behind her head, plus her pig.

Haitian Hunger Cloth

Sunday, January 17, 2010

Yesterday's Ice ( a river runs through it)




Sunday, January 17, 2010 12:47 PM, EST

Yesterday was a good day for Ally. She took a few walks around the unit. She is not a fan of these, but there is a salt water fish tank we stop at for a break. She pretty much cries the entire walk, but we need to get her moving. She says her legs hurt and that is probably because she weighs 30 pounds!!! (She still has a LOT of fluid on board.) We are also blowing bubbles, making a pinwheel spin and blowing a tissue. This will all help get the yucky phlegm out of her.
Last night she needed to go back on a low dose of oxygen because her levels dropped as she was sleeping. She is off it again today. We have already done 2 walks and when she wakes up from her nap we are going on another.
Ally is MUCH more chatty today. She has been making jokes and is obsessed with seeing Spiderman out the window. I hope he swings around later.

Saturday, January 16, 2010

Saturday, January 16, 2010 10:13 AM, EST

Ally had a good night. They are slowly cutting back her oxygen. This morning they took out both chest tubes! Last night Ally took a couple steps from her bed to the couch in the room! She had some breakfast today. She is talking more, but still not her perky self.

Grampa has arrived for the weekend and Auntie should be here soon.

jc's find

Eyes averted

we see the pain fresh

start out of self-reveree

the earth shakes and looking up see

what has been there all along.

No, look away again

how many minutes of fame does desperation get?

wild looks, fading to dull

Three days no water?

too much

seeing stomachs empty our eyes full

we look away

(as we have done for years)

Send money

as the young man all belongings

wrapped in a garbage bag

over shoulder walks by hoping a bed

opened at the shelter.

By Phil Specht on Jan 16, 2010 1:48 AM EST

Friday, January 15, 2010


Avoiding a trip to town
Watching the weather
Making a meatloaf you might
be able to eat,

Lighted a candle for the new moon
New candle in the wind of the fan
wax dripped over the ledge and onto
the stone you carried home for me
from Masada

Somewhere, I think, it all
comes together
Omen or blessing
Your choice, my love

And mine

15 January 2010

Hattip to Kos and DFA

Dear Pat Robertson,

I know that you know that all press is good press, so I appreciate the shout-out. And you make God look like a big mean bully who kicks people when they are down, so I'm all over that action. But when you say that Haiti has made a pact with me, it is totally humiliating. I may be evil incarnate, but I'm no welcher. The way you put it, making a deal with me leaves folks desperate and impoverished. Sure, in the afterlife, but when I strike bargains with people, they first get something here on earth -- glamour, beauty, talent, wealth, fame, glory, a golden fiddle. Those Haitians have nothing, and I mean nothing. And that was before the earthquake. Haven't you seen "Crossroads"? Or "Damn Yankees"? If I had a thing going with Haiti, there'd be lots of banks, skyscrapers, SUVs, exclusive night clubs, Botox -- that kind of thing. An 80 percent poverty rate is so not my style. Nothing against it -- I'm just saying: Not how I roll. You're doing great work, Pat, and I don't want to clip your wings -- just, come on, you're making me look bad. And not the good kind of bad. Keep blaming God. That's working. But leave me out of it, please. Or we may need to renegotiate your own contract. Best, Satan


Friday, January 15, 2010 3:27 PM, EST

We are out of the PICU! We have moved to the P.O.U. (Pediatric Observation Unit) at Sloan Kettering. This is a 3 bed unit a step between PICU and regular hospital room. She is slowly getting rid of tubes (good thing). She is still on Oxygen but she is much more alert. She has been eating yogurt. Happy Day! She is exhausted from the Ambulance ride across the street.


Smoke Hawk

We talked that night
the hawks
you could hear them
from your opened


The cry that
gave you hope

Now I have
an envelope
filled with your
hawk's feathers

Gift of the hawk himself

Perhaps I need to burn them
and let you go

Smoke hawk


Capricorn New Moon 2:11 am EST


January 15, 2005. . . .

So, today is Martin's birthday. And I'm glad this country acknowledges it.

But his birthday always brings to mind so clearly to me the first week that he wasn't. It was beautiful weather in D.C. that week. There was a Forsythia in bloom at my back door, and I spent the whole week digging it out, to replace it with a Mock Orange. I had a radio on the porch listening to the news of the riots as I sweated, disentangling the Forsythia's roots from around the construction junk the builders had buried next to the house.

My neighbor across the street with her doors locked was calling frequently, convinced that the rioters were headed our way. (Right, all the women in the neighborhood had to drive to the bus stop to pick up their maids ~~ was she expecting them to take taxis out from DeeCee just to get our little chicken sh!t ghetto?)

As I sweated, dug and pulled, and the sky was blue and beautiful, and 7th street burned and burned, I recall feeling so hopeful. At last they were angry, and standing up!

When I first came East, I worked in the personnel records dept of Hot Shoppes/Marriott. We had thousands of employees in D.C. mostly cooks, busboys, dishwashers. They bought furniture on credit from the stores on 7th Street. Whole house suites. The terms were very easy, the furniture crappy. But the monthly payments were possible even on a busboy's salary. The interest, outrageous, but at least you had a couch to sit on, a table to eat on, and a bed to sleep on -- for a year or two, until it fell apart. Then generally, they stopped paying. And went down the street to buy another set from another store. The owners didn't much care, D.C. had a really good garnishee law. The buyers were sometimes paying for two or three deceased suites as well as the currently usable one. Every time I'd filed another garnisheeing notice, I'd felt outraged. They were paying double or triple what the junk was worth in the first place. And yet I could see no way out for them, then. No one else would give them credit. They were doing what they could. But if I were angry, just standing helplessly by, how much more angry must they be?

And now, 7th Street was being burned! One could see the smoke from the burning city even from Maryland.

I pulled several bushels of construction junk from that hole, and dragged it to the curb. I planted the Mock Orange with much new dirt, and manure, and hope. And it flourished. And I always think of that week as the beginning, though I know it began earlier, with a man who would not have approved of the riots, but who had given the heart and the hope into the making of them and heart and hope did not end when he did. . . .

Thank you Martin.

Thursday, January 14, 2010 gi=haiti

Thursday, January 14, 2010 3:23 PM, EST

Ally is off the other machine, but still requires an oxygen mask. The oxygen is running at a pretty high rate. She is also getting chest PT every couple of hours. She is more alert today, but she seems kind of defeated. She will sometimes respond to us, but is more interested in watching TV (something she doesn't usually do). It looks like we are going to be at the PICU for a while.

Wednesday, January 13, 2010

Wednesday, January 13, 2010 7:09 PM, EST

I think posting things here is the same as the Sports Illustrated curse.

Ally's morning went fine. Around 3:30 this afternoon Ally started having trouble breathing the room air. Ideally her number should be 100%. They will take anything over 92%. She was running around 88%. They tried a few things including Chest PT (banging on her chest with a soft object to loosen up the junk) and upping her oxygen. These things did not work. So, she is on this funny machine that is pushing oxygen into her. Kind of a set back, but the doctor was actually surprised it didn't happen earlier in the day. I am not sure if we will be headed back to the other hospital tomorrow.

It takes a lot out of you to feel super happy in the morning and super disappointed in the evening, especially on 2 hours of sleep.

While Ally was having a good day she tried to do some talking and drank a lot of apple juice.

It is still better than having that tube down her throat.

Hopefully Ally will be able to rest tonight with some easier breathing.

Ally Note: We just saw 3 coast guard boats zipping down the East River...I hope something cool happens!


Wednesday, January 13, 2010 10:08 AM, EST

Ally is doing well without her breathing tube. She was on some supplemental oxygen last night, but no longer needs it. This morning they took out her NG Tube (a tube that went down her nose to her belly to suck out all the grossness). She is now drinking apple juice, and we have the go ahead to give her some yogurt this afternoon. The doctors are very impressed with her. I think it would be quite rude of me to KEEP telling them that she is a rockstar, because I have already said it so many times. They will learn.
It looks like one more night in the PICU and then back to Sloan-Kettering tomorrow.
Ally is on morphine to help with the pain. She sounds like she has a lot of "junk" in her chest, and just needs to cough a few times to clear it out. She is trying to talk, but the combination of a breathing tube for 6 days and the fact that she is still under mild sedation is making it difficult.
Thanks for all your positive thoughts. Keep them coming!

Tuesday, January 12, 2010

Tuesday, January 12, 2010 9:00 PM, EST

The tube is out!

icy river

Tuesday, January 12, 2010 10:41 AM, EST

Of course things never go as planned.

Last night they tried to lower the work the breathing tube was doing to see if Ally would take some breaths on her own. She did not make the cutoff for extubation (taking the breathing tube out).

We are trying again today. The doctor said that it would "probably" come out today, but that means nothing, until the tube is actually out.

Let's all let out a collective "GRRRRR" please.
(We appreciate that the doctors are being so careful, but it has been 5 days since we've had our little Ally; and we want her back.)

On the plus (because the kid next to us has it much worse, so it is not all bad) Daddy got a good night sleep in the PICU last night.

Monday, January 11, 2010

Monday, January 11, 2010 4:46 PM, EST

Things have improved slightly. The kidney doctor gave the okay for a super small dose of meds to help her pee. They also inserted ANOTHER chest tube. She already had one in her right side that is draining fluid, and they placed one on her left side this afternoon. It drained about 100 milliliters almost right away. A before and after X-Ray show no air in left lung to left lung full of air. The doctor in charge is VERY happy with this result and said around 4:00 tomorrow morning they are going to start weaning her off sedation so they can pull the breathing tube.
They changed her sedation meds and after they upped the new meds a little she settled down finally. She still wakes up and shows discomfort when she is moved or touched, but she seems much more calm now.
Things are moving a lot slower than we thought, but the news this afternoon seems promising. UNJINX!!!
Daddy is spending the night tonight, wish him luck!

Monday, January 11, 2010 10:29 AM, EST

Things are not improving. Ally still has her breathing tube. We are now 4 days out from surgery. Our original estimate was that we would be back at the other hospital by now. The problem is Ally's kidneys. They are not getting all the excess fluid off her body. She is very puffy right now. Her kidneys are also working very hard right now, so it would be tricky to give her a medicine to make her pee off the fluid, because that might make her already fragile kidneys even more fragile, which would mean we might as well move to NYC because her hospital stay would be significantly longer. Complications are stupid and I hate them. To add to all this she is getting used to her sedation meds, so she was "up" pretty much all night, she is in restraints so she doesn't pull anything out too soon. Whenever we touch her she wakes up and is obviously uncomfortable, so we can't even really hold her hand right now. We are frustrated with the whole situation, and I can only imagine how she is feeling.

Note: The other two kiddos in Ally's room are super cute babies, it is fun to watch them.

Sunday, January 10, 2010

Sunday, January 10, 2010 9:39 AM, EST

Ally has been VERY active. As much as we like to see her put up a good fight, this has actually set her back a bit. They are not ready to pull out her breathing tube. It is a small possibility that they may take it out later today, but more likely it will be tomorrow. This is very frustrating. It is not fun to be one of 3 adults holding Ally down so she doesn't hurt herself. This also makes it seem like the 10 days of recovery in the hospital was a low estimate, and it seems we are going to be in NYC longer than we thought. Hopefully I can update later with better news.

(On a positive note....Ally's room has a beautiful view of the East River. When she does wake up she is going to love seeing all the boats go by.)

Saturday, January 09, 2010

Two Spoon Winter

I had not yet been born

So the story seems as subtle

As the snow was deep

The maple ladle skimmed the fat

For the dogs in good times

It was deep and wide

And as a baby toy

The broken spoon was sweet to suckle

It had been a common spoon to my mother

Til the year the sky fell

Leaving parties stranded, no buffalo

My mother knew immediately that spring was

Very very far away

And so a meal

Measured two spoons to a bowl

It was a cold and desperate night

When the spoon was snapped in a fit of hunger and frustration

By the hunter whose effort was futile

Gaunt stomach

Knawing Anger

Rations reduced to a single spoon

And the common object

This baby toy


Wooden ladle handle

Became the teacher

It took a full larder

And many springs

To build hope into this child

Born with a wooden spoon in his mouth

By Phil Specht

Saturday, January 9, 2010 9:30 AM, EST

Last night I spent the night in the PICU with Ally. The room is set up as follows: It is a large room with 3 patients, and in our case 2 nurses. There are pumps and alarms beeping ALL night. Everyone does their best to stay quiet, but it is almost impossible to sleep. The night before Daddy got about 2 hours sleep, last night I fared better with about 4 hours. The nurses Ally has had so far have been AWESOME! We are very pleased with the care she is getting.

Speaking of Ally: The doctors would really like to keep her breathing tube in until tomorrow. Ally has other ideas. She has been giving everyone trouble by not staying sedated. They have had to up her meds a few times now to keep her calm. (We like that she is fighting, but we really do need her to stay calm for now.) At one point last night the nurse found Ally had scooted herself halfway down the bed. The doctors and nurses are saying she is making baby steps forward. The only strange thing that is going on is that her body is making a lot of acid. They cannot find a reason for this and the plan is to wait it out for a bit. They do not seem super concerned about it, so we are not either.

Some details about surgery:
The surgeon said he removed everything he could see. There was active neuroblastoma in her. He was able to save her kidney (we were pretty sure that was a goner) and they were able to do radiation while she was still open. All good things.

Hopefully tomorrow I can write that Ally is breathing on her own. I sure would like to hear her little voice again.

Friday, January 08, 2010

waxing and waning
gibbous full new
the moon

babies crown
the way to enter

breath and soul
and a star in the crown

how lovely is our
as it speaks of us

whisper that
you love us

twinkle if
you love us