Thursday, December 31, 2009
Singing to the Moon bikesnapper
Nights are at their longest and darkest. The term Long Night Moon is a doubly appropriate name because the midwinter night is indeed long and the moon is above the horizon a long time. The midwinter full moon takes a high trajectory across the sky because it is opposite to the low Sun. This is the second time the moon turns full in a calendar month, so it is also popularly known as a "Blue Moon." Full moons occur on average each 29.53 days (the length of the synodic month), or 12.3683 times per year; so months containing two full moons occur on average every 2.72 years, or every 2 years plus 8 or 9 months. There will be a partial lunar eclipse that will be visible from Europe, Africa and Asia with this full moon. At its maximum 7.6-percent of the moon's diameter will become immersed in the Earth's dark umbral shadow.
Posted by puddle at 12/31/2009 02:13:00 pm
Wednesday, December 30, 2009 7:06 PM, EST
If I were to title this post it would be:
I Hate it When the Plan Changes
This afternoon we got a phone call from Sloan-Kettering (Dana that is where we will be, we hope that is the hospital you are working at....and of course we remember you!). They just wanted to let us know about Ally's scans next week. Our impression before 4:00 this afternoon was that Ally had several scans next Tuesday, we would have Wednesday free and her surgery would be Thursday. So......daddy was very surprised when they said Ally's Monday scan would be in the morning. Ummmm.....we are leaving Boston at 11:00 on the train on Monday. CHANGE OF PLAN!!!
We had to scramble and get our train tickets refunded, then buy the more expensive weekend ticket and get ahold of the social worker to get into the Ronald McDonald house earlier.
Changing the train tickets was actually easier than we expected (and we got a full refund!) and we are still waiting to hear about the Ronald McDonald House. Not a huge deal, but now we have one less day at home, and have to travel to Boston in what seems to be a 3 day snow storm. I am sure everything will work out...it always does!
Happy New Year!
Posted by puddle at 12/31/2009 12:05:00 am
Wednesday, December 30, 2009
Tuesday, December 29, 2009
Monday, December 28, 2009
Sunday, December 27, 2009
Saturday, December 26, 2009
Friday, December 25, 2009
Friday, December 25, 2009 9:48 PM, EST
Today was perfect!
Posted by puddle at 12/25/2009 11:18:00 pm
(¸.•´ (¸.•´ .•´¸¸.•¨¯`•
Posted by puddle at 12/25/2009 02:48:00 pm
Posted by puddle at 12/25/2009 02:02:00 pm
Posted by puddle at 12/25/2009 11:09:00 am
Thursday, December 24, 2009
Wednesday, December 23, 2009
Tuesday, December 22, 2009
Monday, December 21, 2009
Sunday, December 20, 2009
Sunday, December 20, 2009 6:38 PM, EST
We had a super fun weekend.
On Saturday morning we ventured out with Ally to do some groceries and Christmas shopping. (Very nice, since she has not been able to be in public since chemo.) On Saturday night we saw many friends at a housewarming party! Ally got to meet 2 dogs. She loved playing with them, and rearranging all the little things she could reach around the house.
Today we went to Vermont and visited with Daddy's side of the family. It was actually the first time many of the Vermont relatives have met Ally. (Her first Christmas she was very sick with ear infections, and last Christmas she was in quarantine.) Everyone was very excited to see her! She met a cousin about her age, that she had a lot of fun playing with. Ally did very well at both parties. She actually spoke to some people and gave high 5s to some!
Check out our flickr site for pictures.
We are looking forward to a nice week ahead (hopefully it will move along quickly...last week was the first week in a while were Daddy and Mommy had to work ALL FIVE DAYS!!! We were exhausted by the end of the week...but also happy we were able to work 5 days in a row, as that meant Ally was NOT in the hospital!). Daddy and Mommy have to work Monday, Tuesday and Wednesday, but we both have Christmas Eve and Christmas Day off. This year we are hosting Christmas at our house! We are very excited to not have to split our day between both sides of the family.
Ally has a blood draw this week (probably Wednesday), and we expect her counts to continue to go up. It looks like she is going to be all ready for NYC.
We have a busy week, with getting ready for Christmas and all; I will try to update Christmas night or the following day with pictures of Ally.
Ally calls Mommy "Honey", not Mommy.
Posted by puddle at 12/20/2009 10:34:00 pm
Saturday, December 19, 2009
Friday, December 18, 2009
Thursday, December 17, 2009
Wednesday, December 16, 2009
Wednesday, December 16, 2009 4:29 PM, EST
Ally had blood drawn this morning. Her counts are going up. Her white cells (which were 0.1 and keeping us in the hospital) are up to 2.6 (a normal person's would be around 6). Yippie! Her red cells are moving up as well, which means we should not need anymore transfusions before we go to New York for her surgery.
Ally has been having fun moving the ornaments around on the Christmas Tree. She has yet to notice the 2 gifts underneath it (shhhhh, don't tell her!)
Her energy has picked up, and her eating has even picked up a little bit.
We have a busy weekend ahead, full of parties and friends.
Mommy: "Ally do you want to wear your purple jammies tonight?"
Ally: "Heck Ya!"
Posted by puddle at 12/16/2009 05:37:00 pm
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Posted by puddle at 12/16/2009 04:59:00 pm
Tuesday, December 15, 2009
Beautiful day here! The north sky steel gray and stormy looking, the center full of light, igniting the white bark of the sycamores. Just lovely!! AND. . . .
My spring water is running again, if only for the day. Filling buckets as we speak. . . .
Being awash in water, what can I do but wash? The cups and bowls and pans that were exiled to the sun porch at the beginning of summer in name of redoing the kitchen, are being dragged back in and scrubbed up in today's unexpected blessing of water. Also doing a load of clothes.
Life is good.
Posted by puddle at 12/15/2009 07:57:00 pm
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Posted by puddle at 12/15/2009 04:59:00 pm
Monday, December 14, 2009
Sunday, December 13, 2009
Saturday, December 12, 2009
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Posted by puddle at 12/12/2009 04:47:00 pm
Sharing Christmas with family. If the stars were nearer we would fly there or flow in the river to the ocean the argument made in Judea of One Body One Blood the holy answer found as I enter your world you and your sacrament of creation childbirth body and blood sharing stars and oceans and all other brothers and sisters born of clay and ash the love flowing in and out around and Creation is the question and the answer Salvation the sharing of gifts of thanks.
Sharing Christmas with family.
If the stars were nearer we would fly there
or flow in the river
to the ocean
the argument made in Judea
of One Body One Blood
the holy answer found as I enter
you and your sacrament of creation
childbirth body and blood
sharing stars and oceans
and all other brothers and sisters born of clay and ash
the love flowing in and out around
and Creation is the question
and the answer
Salvation the sharing
of gifts of thanks.
Posted by puddle at 12/12/2009 02:58:00 pm
Friday, December 11, 2009
"Ally going to sleep under Christmas Tree tonight."
Friday, December 11, 2009 6:32 PM, EST
Ally had some blood work done yesterday. We got word that her red blood counts are going up on thier own; hopefully this will mean no more transfusions. Her white cells hit the magic number where we can stop giving her the injections in her legs and we were able to take her off the antibiotics! This is very good news in the diaper area.
We have been enjoying our time at home. A teacher friend of Mommy's brought us the most beautiful tree last night! It is the perfect shape, size and smell! Last night we got the lights on, and tonight we finished with the ornaments. Ally had so much fun putting the ornaments on. (Several of them are laid on the branches, rather than hung, but that is the way Ally works.)
We are looking forward to a nice weekend. A couple of Aunties, an Uncle and a set of Grandparents are scheduled to visit; and Mommy and Daddy will get to go out and shop and be together, just the two of them.....ahhhhh, very nice.
Posted by puddle at 12/11/2009 11:02:00 pm
Posted by puddle at 12/11/2009 04:56:00 pm
Thursday, December 10, 2009
Posted by puddle at 12/10/2009 09:32:00 pm
Wednesday, December 09, 2009
Tuesday, December 8, 2009 4:39 PM, EST
We are home!!!
Posted by puddle at 12/09/2009 03:44:00 pm
Monday, December 7, 2009 9:00 PM, EST
Still at the hospital. Ally had a good day today. She is showing more energy, and we would REALLY like to take her home. We are tired of being stuck here, we are tired of hospital food, we are tired of Ally being connected to a pump, and we are tired of missing work. Daddy took today off and I will be taking tomorrow off. We really just want to be home.
Note: Ally got to meet 2 dogs this week! A Saint Bernard named Duchess and another dog (much smaller) named Molly!
Posted by puddle at 12/09/2009 03:43:00 pm
Well, Ally is still in the hospital. Her temperature has been staying below 100 for pretty much the whole day, but it is above 98.6. This is not really our concern anymore. When we were admitted her white blood cells were 0.1 (a normal, healthy count would be around 6). Today they were 0.4. A step in the right direction, but tomorrow they could fall to 0.3 or go up to 0.5 and then fall again the next day. They want to keep Ally until they see real growth with her white blood cells. The medicine we are giving her to help boost those is the injection she gets in her leg everyday.
So....there is a light at the end of the tunnel, we just can't tell where it is yet.
Below are three photos, by which you can see the progression of Ally's hair loss. There is one of her pre-haircut, then one with a little tear in her eye post haircut. Even from there, she lost more hair. Last you can see what she looked like earlier today.
PS: Thanks to the neighbor that cleaned our driveway! It was VERY much appreciated!
Ally post-haircut, with a tear in her eye:
NB~~ I'm posting this with partial pics because I've been trying for four hours to download *whole* pics, and the process keeps crashing the 'puter. So just getting this up, and will try to get the pictures in another day.
Posted by puddle at 12/09/2009 11:20:00 am
Sunday, December 06, 2009
Saturday, December 5, 2009 2:56 PM, EST
Today has been a better day. (And I must say yesterday was only a bad day for me, not for Ally.)
They switched her antibiotics to ones that don't cause pooping (you would have thought they would have started with those...).
She is still running a high temperature, but lower than yesterday.
Ally got to have a tubby at the hospital today. At first she was not a fan, but once she was in she had fun.
Her doctor is encourage by Ally's energy level, but will still not commit to a release date. It looks like we will be here until sometime next week. Grrrrr. We were hoping to get our Christmas Tree this weekend.
Right now it is snowing like crazy up here, and we are going to take Ally on a walk around the hospital.
Posted by puddle at 12/06/2009 02:13:00 pm
Friday, December 04, 2009
Friday, December 4, 2009 3:41 PM, EST
Today has been a rough day. It started in the middle of the night with a 102.2 temp. That is not going to get us out of here any time soon. She has maintained this temp throughout all of today.
When Ally woke up she pooped, and pooped and pooped. It required 3 sets of sheets, 2 sets of clothes and several hand washings. It took over 2 hours to actually hear about the plan for her uncontrollable poop; which was to just let it go, and if it got worse then they would up her IV fluids. Thankfully Ally’s gut has been good all afternoon.
Then, Ally needed platelets today. It was supposed to be an hour wait, it actually took 4 hours.
Also, anyone who would be able to talk to us about when we are getting out of here is in a big rush and does not have time to talk to us. This may be the most frustrating part of today.
Normally we are very happy with the hospital, I guess everyone has a bad day now and then.
But of course, Ally is happy as can be, that makes all the silliness bearable.
Posted by puddle at 12/04/2009 07:06:00 pm
Thursday, December 03, 2009
These Ally hats are brought to you by Susan D from HEP (Susan also is a member of Blankets for America, another Howard inspired service group which makes blankets and other things for newborns and preemies.) The three on the right were hand knit by Susan; she found the other two at retail (good eye!)
(And thanks for the correction, listener!)
Posted by puddle at 12/03/2009 06:14:00 pm
Wednesday, December 02, 2009
Wednesday, December 2, 2009 2:15 PM, EST
"Long Term" and "For A While" are not words you like to hear from the doctor. We are guaranteed a suite here at Hotel Hospital at least through Friday, and most likely into next week.
The plan (which usually changes) is to run antibiotics through Ally at a regular pace, keep an eye on her temp and wait until she has some white blood cells. This can take anywhere from the next few days to two weeks. Her temp has been really good since we have been here and Ally has been in a super mood. She went out and did a little sand art at the craft table this morning. She has even been watching a little TV. Still not much eating, so we have a new plan, set up by the nutritionist, that will hopefully add some weight to Ally.
She still refuses to look in a mirror since we cut her hair. Poor kiddo. The staff here all love the new haircut though.
Posted by puddle at 12/02/2009 07:09:00 pm
Tuesday, December 01, 2009
NOTE (found at end of messages): Ally likes to roar like a pirate, often.
Posted by puddle at 12/01/2009 11:43:00 pm
Tuesday, December 1, 2009 10:30 PM, EST
We are at DHMC. Ally had a temp of 101 and here we are.
We are all settled in at 10:30, Ally is sleeping through lots of stuff. She is a good girl.
Posted by puddle at 12/01/2009 11:32:00 pm
Tuesday, December 1, 2009 6:45 PM, EST
Ally is home. Her temp has been running close to 100, so we may be headed back to DHMC.
Cutting her hair was not fun...for anyone.
Posted by puddle at 12/01/2009 09:31:00 pm