Thursday, February 24, 2011

Pants are a Privilege

Dear Piper,

I'm looking at you.

I understand that this CMV bit is no fun for you so I hate to tell you this but your pants privilege has been revoked. That's right, you are no longer allowed to wear anything to cover your bottom...two diapers are the only exception. This "no pants for poopers" rule has been thrown about often in the 6 years since the Needham Crew has been expanding but unfortunately it is your little rumpus who is putting it into action.

Please understand that we have many pretty pairs of leg warmers to keep your legs warm and you now have some very pretty hair on that very pretty face so lets put that to work and keep a hair bow in, shall we? No one will ever even notice you are pant less.

The only exception to this rule will be your visits to the clinic because it is simply the only place you are currently allowed to go at this time. I apologize ahead of time that I do not entirely trust your bottom yet and will continue to carry around 3 or 4 additional outfits until you prove that you are capable of only using the one outfit per outing. And yes, I will keep bringing myself an extra shirt along just in case you feel up to napping with mommy, aka pooping on my tummy, while chilling at the clinic.

Until a washing machine is available in this apartment or you begin to appreciate how lovely pants are, I am going to just continue tacking that additional diaper onto your little bum, covering your car seat with plastic bags, setting you up to play on plush( no longer used by anyone else) towels and focusing on the miracle that is your head full of beautiful hair.

I love you more than pants,

Tuesday, February 8, 2011

I'm moving.

First, we did move out of room 194 back to my very own home. It was lovely. I am happy. Piper looked a little weirded out when I showed her my bare toes and Linley puked on me.

Back that up...

Linley puked...

Not Piper...

Still somehow, Linley also couldn't quite make it to the toilet.


Welcome Home Mommy!

So, now I am planning a big family move to ABCDE. Don't ask, that's about as imaginative as I can be at the moment while thinking up a pretend town. I'd ask Linley for tips but shes all puked out. Which brings me to the very best part about residing in ABCDE. There is no puke.

I hate puke.

I am totally over puke.

At least back at room 194 I was able to call for the cleaning friends, er crew and they would clean it up for me. Here, well its mostly me. Chad did the first go round, I did the second and as proof of Linleys higher esteem for her mother, she promptly puked on my foot.

I hate puke.

I am totally over puke.

I am choosing to look at the episode as a glimpse into what Linley would be like should she ever drink a wee bit to much. She was all..."'oooh, mommy, I threwd up on your foot" and then she was all "I think I am dying" with all the passionate drama that an almost 6 year old can muster up. I was holding back her hair, mentally smiling and physically gagging and wondering just how far away should I place my new imaginary home ABCDE.

ABCDE shall also have my own personal cleaning crew.

...and a tree with candy cane Hershey's kisses year round and live worship music 24/7 and a home with lots of porches and windows and a womb filled with promise and multiple pairs of the red ballet flats that I wore out years ago and could never replace and a salsa garden and healthy bare foot little daughters and good beer and and a haircut that never needs trimming and all my favorite people and millions of books and a sun which shall never rise before 10am.

Is that too much to ask? :) And what would your ABCDE be like?

Monday, February 7, 2011

"Hey, its okay" (hospital style)

to wander the hospital just to hear how sweet and adorable your one year old is.

to wonder if its inappropriate to consider your daughters nurses close, personal friends.

to be tired of drinking coca-cola...this really happened.

to sink large parts of your income into the gift shop simply because its the only thing to do.

to want to smack the parents complaining about being inpatient for 3 days for the flu.

to have memorized a large percentage of anything that Elmo has ever starred in.

to get ecstatic on the days when Moes is the vendor in the cafeteria.

to find showering daily a huge accomplishment and shaving a big joke.

to almost be accustomed to sleeping solely on your left side while sharing a hospital bed with a one year old who snores.

to actually get sensory overload when you leave the hospital.

to request a room cleaning just to have someone to chat with.

to have 12 men working loudly outside your room and be shallowly disappointed that none are attractive.

to be on a first name basis with a good portion of the hospital staff.

to be confidentially able to work most of the screens hanging off of your daughters IV pole.

to mentally kick yourself for dropping out of college when the Doctor is younger than you.

to totally fall in love with other families and children who also visit Cancerville.

Saturday, February 5, 2011

My husband is better than yours.

I have posted before about my total and utter adoration of pedicures. My husband, who is super quick on hints, sent me out and about today and insisted that I find somewhere to get all 10 toes looking lovely. Being the submissive wife that I always am, I did as he said. And I am happy, happy, happy.

Of course, since we are here in our second (but similarly sized) home at CHOA, my little jaunt to pedicure(heavenly thing), Target(heavenly thing #2) and then some yummy curry(heavenly thing #3) take out, required Chad to run the significantly more difficult show here solo with the girls. Success. And huge points for Daddy for recognizing when Mommy has just about had it.

Linley is here with us for the weekend and is really enjoying running the halls with another patients older sister. She has also been staying up until 11:00 or so and eating cafeteria pizza and I am certain when she leaves tomorrow night she shall need some sort of detox. As will Piper who finally last night, for the first time since we got here, slept almost through the night. Both girls are sharing the hospital bed and both girls seemed to really enjoy it and each other.

Piper is doing better every day. Her heart rate, blood pressure, oxygen levels and such are back to normal. Her appetite is growing, but we are still using the NG tube to get at least an overnight feed in plus a smaller bolus sometime during the day. Pipers weight is amazing...she went from being 5.7 kilos to 7.5 in the time we have been here, that is a 4 lbs weight gain! Her CMV levels dropped and then rose some but the Infectious Disease Dr is not concerned at all and still has her on track with the initial treatment of it. Her legs are a concern to me, but the physical therapist just continues to encourage me to work with Piper to not only help her gain her mobility back but also to help her to simply sit unassisted. What a major feeling of one step forward and a million back, ugh.

From what I hear through the grapevine they are planning to let us out, er, discharge early this week. And apparently they are hoping to begin chemo again on Monday. Because Piper began leaping and bounding late last week they chose not to go through the Bone Marrow Biopsy but kept with the CT scan and saw nothing to worry about. Praise God.

So now we begin that time of rebounding. Of relearning things that have been forgotten, of celebrating the things we have once celebrated. Piper is better in her little body, but these past two and a half weeks have been a major reminder of the ramifications of treating her cancer so aggressively. Even more important, they have been a reminder that Trusting and Hoping in my God are the only ways we will ever make it through any trial at any time.

Tuesday, February 1, 2011

Darth Vadar is a poor roomate.

Ask me. I know. Piper and Darth (her oxygen mask that she wont keep on and we try to lean against her) are very happy bedbuggies but mercy, are they loud.

Fortunately her oxygen seems to be better during the day so we are more free to roam and play without either being bed ridden or attached to an oxygen tank. And at the moment that I write this she has not had any sort of a fever all day. And strangly enough, Piper has been incredibley happy all day, even semi participating in occupational therapy and physiacl therapy. There were multiple times through out the day that she was able to support herself in a sitting position and we will be continuing to work at getting her legs strong enough to bear weight. Her smile is back, as is her (currently dirty) hair and her diaper rash is gone.

I am feeling pretty optimistic that she is beginning to turn a corner. Pipers ANC levels rose so signifigantly (up from 1340 to 4400) that all of her leukemia oncologists chose to forfeit the bone marrow aspirate tomorrow in agreement that nothing is pointing towards a relapse so why put her through a painful and unnessecary procedure. They will be doing a CT scan tomorrow at some point to see if any sort of a fungal infection may show up and explain these fevers, although the CMV also can cause fevers. I think its a classic case of covering ones butts.

So today has been busy, my sister came to visit so that kept me laughing and happy. Which is a good thing because Piper can not have anything to eat after midnight tonight and tomorrow will probably be a wee bit more tiring.

All in all...doing pretty good.