growing up.

this is a busy week. we had reese's teachers come over on monday to visit before school. ive never seen her giggle for that long. literally the whole time they were here. tuesday was "meet the teacher" for her - which meant we brought supplies in and said hello. she got the warmest welcome as she pushed that walker through the door. she had on fake purple glasses, a top knot headband, her rainbow shirt, and cut off lace shorts. just so her. and when i remembered that these are the things she picked out. the ensemble she put together, i realized how much she has grown up.

sunday night i said to EJ, "i bet she has a fever. i can tell." he rolled his eyes, got the thermometer, then made the "damn, you're right" face lol

100.

not even a fever for most, but reese's natural temperature is lower than most (tumor location, mainly), and i didnt want it to possibly go higher and us have to leave for the ER even later than it was. she responds like normal - "can we go to the dr to get you some med meds?" "yah. but not my port!"

sigh.

she walks in w me using her walker. no stroller. i don't carry her. i carry my sonic drink - because we obviously stopped for cheese-cheese before we got there ;)

it was a longer night than i expected. i knew that the fever was just something going around our house - i mean, sawyer had a fever only days before. and since then, actually, miller had up to 102.5 and aidan had a low-grade fever. it is just what was floating around here. she sticks her arm out for blood pressure and smiles at the nurses. she made the dr bribe her with stickers before chatting w him, though.

we had to get a "clean catch" on urine to test for UTI so we shuffled our way to the bathroom with a cup. we came back to the room and waited until we [finally] got some emla cream for her port.

she is strong now. after the 30 mins w cream on, they came in with their gloves and accessing stuff. she watched. she surprisingly put a mask on. then we put one on foxy.

when it was time to access her, she tried to kick her legs so we had to hold her legs down.


"im stuck in mud! im stuck in mud!" and my heart broke.

thats from super why. "jasper's cowboy wish". which we have seen three dozen times. jasper has to be a hero and save the horse from the mud. we play "stuck in mud" all the time at home. and we save reese from "the mud" as she is stuck on all 4's on the floor.

but she was just crying. she couldn't move.

we were done in a flash, but i couldn't seem to get her to understand we weren't staying. i told her a dozen times that we weren't sleeping there. we were sleeping at home. port out. bandaid on. she wouldn't even lay down to relax.

"stop your talking, mommy!"

lol so that didn't work.

within a few mins, she settled down. i went to get her a snack and she facetimed EJ. eventually she got it. and in reality, i assume she just thought i was lying. i've told her a dozen times before "meds in. port out." but the length of times have varied. antibiotics, chemo... it just depends. and that's my fault, i suppose.

but now she's older. now she understands more.

so now she goes to school. every day. only this year she gets full day 3x a week. what an absolute blessing. not only will this help with her endurance, and pretty much all things PT, but will get her so much more ready for kindergarten next year. she's learning her letters and numbers. figuring out sounds, recognizing them, and counting. things that i was not even thinking about almost 2 years ago when this all began.

i am just so proud.

the rest of the week consists of more "meet the teachers", play dates, sleepovers, and celebrating our 7th wedding anniversary which is next monday. which is also the first day of school, of course.

since reese will be in school on fridays, i want to join a MOPS group. as a friend said, "only you would find free time and then try to fill it up..."

i am spending today organizing more of the "back to school" portions of the house and im really geeked out about starting this year.

this one is different. this is going to be a good year. a normal year.

...whatever that means.

holding hands.

this week, reese had her port flushed. i told her monday night night we were going to go to the doctor today and she said "no port…" and held that small scarred area on her chest.

i didn't bring a stroller. she walked the whole way. with aidan by her side, the only parts she didnt walk were up and down the long ramped hallway. and then a few breaks to catch her breath from laughing so hard as she purposefully ran into aidan's legs. "crash!!!" she'd say.

at some points, she'd yell for aidan to push her walker and she'd walk with me. side by side. hand in hand. but it wasn't the weird hand holding. it wasn't me with my arm crooked, trying to balance her. my arm was relaxed and we were just holding hands like mothers and children do.

i've thought about this before. i've been walking with miller or another child and thought "will i do this with reese ever again? will we just hold hands and walk together normally?"

yes. 

when we left, aidan said "wow, everyone knows reese." and thats partly true. reese was in a great mood - smiling, laughing w people, giving kisses and racing down the hall. we saw nurses and friends. we saw our main ICU dr from the beginning - as well as when reese was septic - on our way out. i always wonder what people are thinking. he was proud, you could tell. reese was laughing, trying to chase aidan and he turned back to watch, with a smile on his face. he is the best - always forthright and honest with us. so seeing him proud made me feel the same.

we went to get SMC and then on to PT/OT. then dance. then made dinner and met with neighbors for "national night out". it was a good day.

we bring reese's walker everywhere now. i want her to walk into places. and even walk while AT places. she walked through the store with us the other day. i got a regular cart (instead of a big one) and so there was simply no space. sorry reese, walk. and she did.

august has started up and the summer is winding down. we've had a surprisingly cool summer, so playing outside is a must. aidan went to the lake with my parents from thursday through sunday. sawyer had a friend's bday party on saturday. we're planning things like backpacks and lunches. getting our fall dance schedule solidified.

im ready for aug 25 to come and me be SO SUPER HYPED about making lunches until mid september when im like "eat at school today…". im ready to send off 4 kids in one day and go to the gym with my one snuggly baby.

i am ready to wave goodbye in the morning and see them running towards us in the afternoon. im ready for miller to see her friends again and tell me illogical hilarious stories of her day.

im ready to hold reese's hand and walk her into school.

"you come back?" she always asks when we talk about school starting again.

i always come back. every day i come back to hold her hand.

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)

big steps.

literally.

i dont know we got the small metal walker out, but we did. i put some glitter pink washi on the bar and called it her "sparkle walker".

the next day, i brought it, on a whim, to target with us. its easily tossed into the front seat. she wanted it to come. that, alone, was huge. but then she said she wanted to walk into target.

and she did.

i had heard "i hate my pink walker" for so long. a very expensive piece of metal, taking up space in the dining room..

now, let me explain how this went. i got corbin into the basket of a cart and pushed that along as we ever slowly walked across the uneven ground. she yelled at cars that were coming. yet everyone patiently waited for her to pass, waving and giving a sweet smile as they drove by.

we got to the other side, she teetered back a bit, and i rescued her and tossed everything into the cart. i was beaming. just so proud of her.

i kept at it. she uses it around the house, sometimes. she walked into PT with it. its just wonderful. tonight she walked about 4 steps from standing in the middle of her room, to me. and she has also started using the pink walker again because of her new found confidence.

things, in general, are wonderful. there is reese in a good mood and then there's reese how she's been recently - which is awesome. not being sick, helps ;) but we truly spend all day laughing and making jokes and cuddling. we are kitty cats, we write hearts on our hands. we have fun. she is starting to act more "hi, im 4 years old." and less OMG OUTRAGE three'nager.

we have her last MRI while on chemo, tomorrow. and yes, then we have a meeting after that - so no waiting. i am not nervous. at least, right now. i dont know why, but i feel very at peace, mainly feeling as if she is going to rock it. tomorrow, i will feel less certain. but i'll be up at 5am, drink my coffee, feed corbin, pack them both up, and head down as confident as i can be. EJ is going to take A and S to school, then meet us. M is already at my parents' house since they didnt really want a 6am drop off ;)

at labs last week, i tried to get some pics of reese doing what she does. with the people she loves. miller came with us and was, surprisingly, great. reese walked the hall, gave cuddles and thumbs up, and gave some blood. all in a days work, i suppose. how so strange it will be for these to become less frequent. being ripped from a routine is miserable. i felt that way about "drop offs, gym, pick ups, dance" that i had before reese was dx. how strange that i feel even worse about going back to that this summer.



i feel the need to rush and make memories. different kinds of memories than i am used to. i just want to make sure i document how things go right now, at the hospital. people she sees, things she regularly does. i don't know, but its overwhelming. i want photos with doctors and nurses. we will be seeing them, all of the time, still. but eventually in a different type of setting, i suppose... or hope... or whatever. i am trying to plan next week's "end of chemo" in-patient. and that is tipping my scale.

reese had a hearing test today. meh. she has dropped off on her high frequency hearing. which is to be expected. and we're almost done, so...

i think she expected me to make a sad face or something, but i just said "oh ok. thank you!" and went on my way. all things considered, high frequency loss is pretty low on my freakout totem pole. she could be going deaf and we'd say "i guess we should all learn sign language" - because in the end, it just matters that she is here with us. and happy. so this was okay.


aidan woke up from a sleepover on saturday and her eye hurt. long story short, EJ was at the legacy children's ER that night - pink eye and a corneal abrasion. :( sweet girl. she was simply excited about "a bracelet like reese!" i kept her home today, from school, but at least she's not contagious anymore (we got the 8 hr meds). let me say, eye drops for 5 days, though, is no fun for a 7 year old.... or the eye drop giver. ::twitch::


we spent yesterday evening at the splash pad. after hearing that this week was going to be so cold, we had to get out and get some sun. they had so much fun just running around and eating dinner picnic style.


summer is coming. freedom is coming. i am hesitant and nervous... and excited. the countdown to reese's last chemo is about a week. i have to get my thoughts together. and pray that this it.

another new normal. after already getting used to this one.