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Showing posts with label instagram. Show all posts
Showing posts with label instagram. Show all posts

Tuesday, July 29, 2014

reminders.

last week was a reminder.

from God. 

sometimes, things are good. really good. but last week was a small reminder that things can change in an instant.

reese, the past few days, is back to walking again. walking like this. i spent last week crying again physical set backs.

but today i showed her off on instagram… facebook… showed her walking without her walker.

turns out we didnt set her back in PT that far. just a week, it seems. (IG: punkfictionv4)


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Thursday, January 9, 2014

2 weeks.

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i feel like time is flying by me. its insane.

i am stuck between so many things. i want time to go slowly, to have corbin be a newborn for a bit longer. i want it to be in the future where reese is healed and our "normal" is much more boring than it is now. i want march to never come bc i dont want this [working] chemo to end. i want corbin to grow up and play and interact with her sisters. 

so instead, i just… live, i guess. day to day. hour by hour, really. each day ends with us in bed with reese. sometimes i get into bed and she's zonked out completely. sometimes she barely wakes up and smiles and rubs my face and cuddles up. each night is interrupted by a hungry reese or corbin. each morning starts off, now, with me sneaking to the living room to feed corbin before the ruckus of the day begins.

now i have a 2 week old. 

last week, corbin was 6lbs 9oz, which was 3oz up from when we left the hospital. she sleeps amazingly well. generally wakes up every 4-5 hours at night, but ive had a couple nights of 11pm, 5am, 830am. all of that said, thats if she's co-sleeping with me. as of last night, i cut that out and got a rock n play. she slept horribly in the pack n play, but i knew the way the RNP was built, she'd love it. and she did. we'll see how tonight goes. 

she eats every 3-4 hours during the day - sometimes more of a cluster during the evenings. my boobs hurt unbelievably but im trucking on through bc i know in the end ill be happy that i did. 

so now ill just catch up on CR photos :) from one week and today. im pretty sure youll see that today she and miller had a fabulous time…

and that miller is a huge ham who is also growing up right before my dang eyes. and i cant stop it. but i love it, anyway.


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corb 8 days8bw corb 8 days1 corb 8 days2 corb 8 days3 corbin2weeksold 2014-01-09_001 2014-01-09_002 2014-01-09_003 miller and 2week corbin17 2014-01-09_004 2014-01-09_005 2014-01-09_006 2014-01-09_007 miller and 2week corbin20bw 2014-01-09_008 2014-01-09_010

i am so blessed :)

follow us on IG, if you'd like: punkfictionv4 

Thursday, December 12, 2013

icemageddon.

i wrote last week about how amazing reese felt. how normal she was being.

thursday was filled with my 2 youngest lovies doing what they do best - being best friends.

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then the ice hit. we didnt have school on friday. i let them open up early birthday presents of aidan's (a big craft kit thingy) and play on the ice. reese checked it out, but was happier indoors lol
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the rest of the wkend, we were lucky enough to get out a bit… went to the store, to get pizza, drove around very slowly to combat the horrible cabin fever. we did gingerbread trains and cuddled by the fire. cozied up with blankets. we used my belly as a chair. we waited for aidan's tooth to come out (today!!).
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but during all of this, i was worried. worried to the point of crying and puking most of the day. reese woke up on, oh, friday? saturday? boogery, but with all the sinus crap going around, that was that. she was just feeling kinda crappy.

by monday, i posted this on reese's fb page:

womp womp. going to legacy with reese bc im pretty sure she has another ear infection - acting the same as she did the last time, gunk coming out of her nose yesterday and still out of her eyes. blech. hopefully its just a med infusion and we are out. i haaaaate when she is sick its the worst to see such a strong girl act so weak.
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(aidan is "pulling hair" ^^^ in that pic lol reese's fave.)

on tuesday:

sigh. reesey just doesnt feel good she's SUPER tired - and was on the cusp for needing blood at labs yesterday so we'll go in tomorrow morning, early, and get some blood. i am hoping that peps her up. sometimes its like i forget what kids are like when they dont feel good. so if its "just wanna go to sleep" and weak, then thats reese mixed with low hemoglobin. which just makes it worse. then i worry more. and being 37w pregnant sort of whacks out my emotions to begin with.


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on wednesday:

Well hemoglobin down a bit more so we are grabbing blood. Her ANC was 3100 on Monday and today it's 100. Likely a crap virus to go along with it all. I'm hoping the blood peps her up back to close to normal blah.

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then…

we got some blood, reese ate some dinner, but is still weak and tired. since her ANC is likely zero right now, and from looking at huge drop, it seems that whats probably happening is she has a virus that she cant heal herself from right now. so she feels crappy, like our "regular" kids do when sick, but then even worse bc its so hard to fight. plus she was paaaale. so the need for blood made her weaker. so my prayer requests tonight are that she is pepped up a bit more in the morning (or we'll be going back to look for infection, check shunt, etc) and also prayers for peace for the rest of us.


and then last night i had already called back again. she was cold. my thermometer wasnt picking up a temp on her - even though it picked one up on sawyer, when i tested it. they said she'd basically be blue that cold - so i said okay and asked when she should feel the blood "pep" - they said if she wasnt acting more normal by this morning, to take her in. so we did. but not before miller got hugs.
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when EJ got there, they knew this wasnt normal. reese barely was staying awake. she's shaky and weak. she tries to talk and its just too much work.

its like i time traveled. back to a horrible time a year ago - when she COULDN'T do those things. but this all happened in a matter of days.

they took blood to be cultured, urine sample, etc etc - checking all. they did a rapid MRI to check shunt and all looked good there, as well. EJ said that when the nurses heard she didnt even have to be sedated for the MRI (even though its very quick - you still can't move), they were even more worried - simply bc that's not reese.

i spent a lot of time the past few days wondering if her saying her head hurt or her shaky hands or all of this could be because of the tumor, somehow, compounding out of no where. i cried so much. i didnt eat barely at all. i just stared into space and held reese and wondered… the answer was, it seems, "amanda, thatd be extremely weird." and everything looks fine in her noggin. the brain of a mother is an amazing and horrible thing. its intuition is by far its greatest strength, knowing your child. knowing something is off - but the dark paths it can travel with anxiety and worry can remove all sense of security that you once had.

my fears changed so quickly - to possible sepsis. there is an infection somewhere. and they have to find it. she's getting fluids and broad spectrum abx. taking vitals every 15 mins. watching her BP so closely. her temp was recently 98deg - up from a bit over 95deg. right now, we are just watching to make sure she isnt septic, it seems. watching super closely.

EJ is there watching over our sweet baby. he knows i need sleep - to somewhat relax so i dont have a baby right now. so tonight, aidan and i will sleep in the spots where he and reese normally do. i will try not to stress, knowing that a dozen people have orders to keep their eyes on reesers.

prayers for reese, please, that the antibiotics kick in, that they figure out where this came from, and that reese is more… her, soon. she wouldn't even "squish the spider" today :(  her favorite game on the planet. so instead, i just sang our song to her and let my tears fall on her perfect head.

another reminder that things can do a 180 at any point in time. thank you for every sweet message and prayer today. reesey will feel better soon -- we just have to let the meds work. like always, right? ha.