Thursday, February 28, 2013

soccer mom.

so sawyer started soccer.

this is aidan's third season. she loves it. but she also doesnt mind wearing jeans or t-shirts.

when sawyer put on shorts and a tee today, i barely recognized her. then she topped it off with a sparkly red headband and then i knew that she was still under there ;)

EJ took aidan to practice and i took the other ones to sawyer's.

they are called the "goal diggers". no we didnt choose it. yes i think its awesome.

it was so fun to watch her. she has no idea that in soccer you cant use hands. even though we told her 20394820 times. so we told her to put her hands in her pocket lol


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this has been an interesting week for us with reese's meds.

we havent't had to give her DDAVP shot since monday morning at 5am. but let me explain this again --

so we give her the shot when she "pees out". that means that (around every 12 hrs or so) she starts to pee a lot. a big diaper. or 2 larger diapers. then the shots stops her body from peeing out again. usually at this point in the day, her ins and outs are out of wack --- there is more OUT than in - which then leaves her sodiums to go higher.

so she has not done all of that ^^^ since monday. on tuesday we went in for labs. sodiums were 140. awesome. then i talked to the endos on wednesday they said labs today. so i went to labs - sodiums 145. awesome. soooo they want me to go back tomorrow. if she does flip to more on OUT than IN tonight, then we're at a good spot to give the DDAVP, but they only want a 1/2 dose. which is, like, almost non-existant on the syringe. like, we have to make up the spot its so small lol

they seem to be baffled? lol i dont really know. she should be peeing out bc of her DI. her sodiums should be all "omg come in and stay for 24 hours!!!" and honestly, i expected that today... but no. so we shall see, i guess what they are tomorrow. the math right now says about even on I/O so we may be doing that 1/2 shot tonight, but, i mean, thats the first time since monday early.... its just weird.


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coming up for reese next? MRI at 730am on march 19th. so i'll get there about 6am, hide all drinks and food from her (the worst part of the day) and then MRI. then we'll go down to chemo.

she feels good. she is funny and happy and dancing (check out my vine --- punkfictionv4 --- there are dancing vids haha). she just hangs out and laughs and is so... normal.

we're having good days. thank you all for your prayers and thoughts and love. i'll update on the sodiums as soon as i know tomorrow :)

Saturday, February 23, 2013

as a whole.

as a whole, life seems to feel.... good.

reese feels good.

we went for chemo on tuesday. cisplatin first. then etoposide (vp-16). i got there at about 3pm. got a room about 3-4 hours later after hanging out in the infusion room. and then they started chemo at, like 9pm.

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one round of etoposide the next late afternoon and we were sent home. high sodiums (about 153?), but we were comfortable handling that. the next afternoon we went back for another etoposide and now we'll just go back on tuesday for labs.

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reese has puked a few times a day. we stay on top of it with zofran. one night we did alternate between that and ativan, but over all, it doesnt bother her necessarily. she just pukes and goes back to bed or back to what she's doing after we clean her off and change her clothes.

they say cisplatin's side effects of puking "peak" at day 4-5, so we still have a bit... but she feeeeels good.

she talks, she uses her right hand as an assistant and is much more aware of it, she laughs all day, is sneaky ;), and is just overall so normal.

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i made the mistake of watching her "going home" video last night. she was so different. its no wonder that the oncologist is just amazed at "how good she looks!!!" - she was just so weak. didnt really hold herself up, was so... sideways (with her eye and smile) compared to now. all of it was so different.

so today i am thankful of how good she feels. and praypraypray that she only gets better with every chemo treatment.

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this past week, ashley and i went around town scouting for new locations. we drove around town with kids upon kids packed into my car.

on thursday night, i let loose. i let aidan and sawyer have a time to remember.

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today was a fun day, too. aidan had soccer this morning, then dance at 1pm. we went and ate lunch, came home for naps, then i took ASM to the park while EJ took reese to some guy store that i have no interest in ;)

they did their fave thing almost the entire time.... the swings.

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tomorrow we have nothing, really. hopefully not a lot of laundry puke.

after my vent session a post or two back, i feel better. i feel like we are at a place where we just are getting into a rhythm and its nice.

i wanted to add this, too -- MILLER'S FIRST BIRTHDAY VIDEO!! ***click!!

also, in the IGs you'll see aidan's hair all up and cute for dance --- i don't think i posted this on my blog, but HERE is aidan and 3/4ths of her mini squad performing their dance for only the 2nd time. and may i say, i think she's awesome ;)

and to answer this question, which i get asked a lot:  when is the next MRI? this i am not 100% sure about, but i *think* it is going to be before we start the next round. that will be 2 months. i will ask on tuesday. :)

alright, on to the IGs of the past few weeks!! (punkfictionv4) -- remember the first hospital pics here are from her sedated hearing test to get a baseline (etoposide can reduce high frequency hearing....)


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