Tuesday, February 9, 2010 5:06 PM, EST
Check below for more news about Ally walking!
3:00:
A little background: Ally has been hooked up to a machine almost 24/7 since we have been home from NYC. Mostly her feeding tube. We are finally at the point where we can ease back on her feedings. Grammy and Grampa turned it off around 11:30 this morning.
I got a call from Grammy around lunch time today.
GREAT NEWS!!! Ally chose to do some walking on her own! She walked from the kitchen to the living room and then chose to sit on the floor and do some playing! She is very stiff, but not complaining of too much pain.
Yeah Ally!!!
5:00:
Update when I got home to talk to Grammy and Grampa: Ally walked all over the place! They have pictures of her "vacuuming" all 3 rooms downstairs. They also have pictures of her doing other activities. She is tuckered out right now, but is in good spirits, and we hope to witness some of this walking tonight.
Tuesday, February 09, 2010
Sunday, February 07, 2010
Sunday, February 7, 2010 4:42 PM, EST
Today has been a better day. Ally's temperature is holding steady in the lower 99s. Hopefully it will stay there as she gets her weekly antibiotic and continues to get her GCSF injections (which help her body make white blood cells). The THREE HOUR NAP today seems to be working well for Ally as well. We are hoping her temp will go back to normal soon, without a trip to the hospital.
Ally will have a blood draw tomorrow. Also hoping that her counts have not bottomed out again, and that she will not have to be transfused again on Monday or Tuesday.
Ally's spirits are pretty good. She can get quite emotional. Such as yesterday, when I was reading her this lovely book about a dog getting lost in the snow, and then his family finding him. We have read the book several times in the past, but yesterday she was hysterical when the puppy got lost. I had to stop reading, calm her down and then quickly read to the part where the puppy finds his family. Then, 3 minutes later she was laughing about something else. Generally though, she is in a good mood. She still doesn't want to walk on her own.
Those steps she took on her own the other day seem to be a fluke. There is some talk about a physical therapist, but there is also talk that her body just may not be ready to begin walking again. We feel if we can just get her to stand and do a little walking each day, hopefully it will increase bit by bit and eventually she will do it willingly.
Ally's tummy is still a bit sensitive. Last night she puked, but we think it was because we stopped her pump, flushed her tubie through, and then gave her medicine...too much in her tummy at one time. At least it was right before we were going to bring her upstairs for bed, so we just made a quick detour for a bath and Ally was good.
Here is to an uneventful week!
Fun Little Tid Bit: A one block ambulance ride in NYC (literally across the street) costs roughly $4,000. (Ally did this twice.) Thank goodness for insurance!
Saturday, February 06, 2010
Saturday, February 6, 2010 5:26 PM, EST
This is a "I'm feeling sorry for myself, even though Ally is the one who should be feeling bad, so that just makes me feel guiltier" kind of post. Feel free to skip this one.
Things went well at the hospital on Friday. Ally ended up getting platelets and red cells, so Grammy, Grampa and Ally pulled in around 5:30PM, from a 9:00AM appointment.
When Grampa handed Ally over I thought she felt a little warm. A bit later we took her temp and it was 99.1 (she gets admitted to the hospital for a 100.5 temp). Right before bed she spiked up to 100 even. This morning it was back down in the low 99s/high 98s. Then, all of a sudden she jumped a whole degree from a perfect 98.6 to 99.6 in an hour....so, being a good mom I canceled my plans to have fun with my friends, in fear of getting called out of a movie to drive Ally to the hospital....here comes the I am feeling sorry for myself part....her temp has dropped back to the low 99s. I could have gone. Instead I am stuck watching/listening to the stupid knock off version of "Cinderella", Ally has somehow become very attached to.
Anyway...we saw this pattern in her last round of chemo. We are expecting her to get to 100.5 sometime tomorrow or Monday.
Thursday, February 04, 2010
Thursday, February 4, 2010 12:12 PM, EST
We just got a call about Ally's blood counts. Her platelets are VERY low (her # = 14, an average person has 150). Daddy, who is home with Ally today, knew this to be true, because Ally bled through a couple band-aides after her nurse left this morning.
So.....Ally will go to the hospital tomorrow for some platelets.
Also of note, her ANC has dropped to zero. This means she has no white blood cells to fight off infection. The first time she had this chemo her white cells did not drop this low; it just shows her body is not as strong as it used to be when dealing with chemo. :(
P.S. We went two days without puke, and then, this morning, at 2:30AM, we heard Ally yell, "Mommy, Ally puke!". Grrrrrrr.
Note: Ally took some steps on her own today...willingly!
“The core Republican idea is destroying the American way of life.”
Via Paul Krugman, small government and Colorado Springs. The city’s voters rejected a tax referendum needed to cover a budget gap caused by the recession. So, essentially, the city is shutting down services.
More than a third of the streetlights in Colorado Springs will go dark Monday. The police helicopters are for sale on the Internet. The city is dumping firefighting jobs, a vice team, burglary investigators, beat cops — dozens of police and fire positions will go unfilled.
The parks department removed trash cans last week, replacing them with signs urging users to pack out their own litter.
Neighbors are encouraged to bring their own lawn mowers to local green spaces, because parks workers will mow them only once every two weeks. If that.
Water cutbacks mean most parks will be dead, brown turf by July; the flower and fertilizer budget is zero.
City recreation centers, indoor and outdoor pools, and a handful of museums will close for good March 31 unless they find private funding to stay open. Buses no longer run on evenings and weekends. The city won’t pay for any street paving, relying instead on a regional authority that can meet only about 10 percent of the need.
The article also says residents distrust the city government and don’t believe their tax dollars are being spent wisely. But this level of cuts in services is not caused by overpaying a few people or leaving the lights in the library turned on too long.
Thomas Levenson (via Monica Potts) writes,
This is, among other things, what folks like Megan McArdle never seem to get — not merely that governments do things that (a) private entities won’t and or can’t and (b) that are necessary if you are, say, going to have thousands or millions of folks living in close proximity to each other, and (c) those things that need to be paid for — by the people in common, that is to say, by government — include a bunch of stuff essential for a sound economy and any chance of achieving what is commonly thought of as the American way of life.
These cuts probably will hurt business, including tourism. The right-wing model that sees the public and private sector perpetually at odds with each other is a denial of the basic fact that those miraculous free markets wouldn’t exist without governments that provide stuff like roads, bridges, street lights, law enforcement, a stable banking system, garbage pickup, etc., and these are things that have to be paid for somehow. And unless we want to go to a system in which all roads are toll roads, houses burn until the firefighters are paid (it’s been done), and street lights are all coin operated, this means government does these things through tax money.
Levenson is right — “The core Republican idea is destroying the American way of life.”
Wednesday, February 03, 2010
Tuesday, February 2, 2010 6:20 PM, EST
The blood transfusion went well today. It was a long day at the hospital, but everyone made sure Ally had enough medical supplies left in her birthday stash...she came home with lots more to replenish her supplies.
Her red blood cells should be up now, with the transfusion, but this transfusion did not include platelets. Based on how much her platelet count dropped from yesterday to today it looks like she will need to go up on Thursday or Friday for platelets.
Ally has been is a super good mood. Talking wise she is back to her old self. She still refuses to walk on her own, but is now willing to sit by herself for a bit, and will scoot herself off the couch for a diaper change (yes...she is still not potty trained, and it looks like it's not happening anytime soon). Oh well, we pick our battles. We are trying to encourage her to move around a little each day. Tonight's big challenge will be going half way up the stairs. We tried last night and it just ended with Ally tucking her legs into her body and refusing to move. Wish us luck on try #2.
Tuesday, February 02, 2010
My own personal Whistlepig. . . .
Monday, February 01, 2010
Monday, February 1, 2010 2:35 PM, EST
We got the results of Ally's blood draw today. Her counts dropped quickly and dramatically. She will need to go in for a transfusion tomorrow.
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 day....now 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
So...you 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.
Monday, January 25, 2010
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!
Anyway....today 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.
A River Runs Over It. . . .
jjl
Where the river slopes down (to your right) is where the bridge is. . . . then it drops off of the bridge. . . .
