the best 5 days.

so we have been doing our "new normal" for 5 days now.



5 days of wondering "wait, was that peeing out? did she breakthrough?" "did you mark down that 150ml drank?" "how much did that diaper weigh?" "are you going to wake her up while i get the meds ready?" and so on...

my best friend, ashley, from Lily Toes Photography yet again outdid herself by putting THIS video together of our going home. i cry every time i watch it.

you can see in the video how weak she is. i want to remind people that she is not actually... sick? i mean, she doesnt feel sick, really. she is just weak. she cant stand, cant walk. she can only sit for a while before needing to lay back. she needs help from going from laying down to sitting. as we were told, we trying to do things with her during the day -- she spent weeks laying down. while tv and relaxing is good for the soul and we do that often, sitting up, playing, trying to stand, and being interactive is best for healing.

she laughs. she smiles. she welcomes everyone that comes into the room with arms out and a holler of their name. she hugs miller all the time. she loves petting the dogs. she's been playing blocks and other toys.

on a PT front, things she didnt do until home - reaching forward, rolling over on her side, trying to sit fully up, stacking blocks. and, well, playing, in general. PT and OT had a rough time, but within a few hours of being home, reese was back to what she knew.

the last few days have proven that family and home is, indeed, the best medicine.

thursday night, we gave her a bath and put her to bed. PJs open so we could sneak her ddavp in later.

on friday, we played. lots of playing. sisterly love at its finest. with some cheese-cheese thrown in.

saturday morning, we brushed her hair as best as we could and put a clip in and set out to get her out of the house. she needed bigger shirts (as you can see bc this one fit her so we kept her in it haha).



what a happy girl she was all morning. just getting in the car and sitting in a stroller for a few mins had her smiling from ear to ear.

we got home and brought out all of the christmas decorations. i have been waiting for this for weeks. just the entire family getting ready for christmas. the girls were silly.

then, that night, i took my favorite photo of all time.



then i found aidan asleep like this. lol

on sunday, my brother and niece came over and brought goodies from his MIL. so later, A and S decorated gingersnap cookies while miller made a huge mess haha reese looked a bit more like herself :)

and reese snuggled.



then we had a cozy night :)

this morning was business as usually. i got aidan ready for school first.

we did the rest of the morning duties and then it was naptime, apparently.



well not the whole time

this afternoon we picked aidan up from school and then, before dance, aidan brushed reese's hair. reese so so loves that.

and then here we are. 5 days in. 5 days of having the skelte 6 under the same roof.

we have a long long road. we have 7 types of meds to give on various times, multiple times a day. which, by the way she hates. we have chemo once a week for 15 months. we have PT, OT, ST multiple times a week. and then we also have life. regular, boring, day to day crazy town life.

the prayer warriors that have been thinking and praying for reese for the past 6 weeks are nothing short of amazing. the donations, the gifts, the postcards... i cant say enough times how grateful i am for everyone. you look at life differently when you see the type of community you have around you -- full of love.

so now, ill go give reese more meds, wait for her ddavp shot, cuddle on the couch, and go to sleep - knowing that i'll see my baby immediately in the morning.

okay and maybe in the middle of the night ;)

modern medicine.

modern medicine is amazing. i sit and watch the nurses and doctors, listen to what they say during rounds, we chime in with what we think... but in the end, the medicine is amazing

endocrinology is unreal, first of all. the only way i can explain it, without saying to wiki, is that it helps every part of your body that you take for granted. the awesome thing is that they can synthesize almost anything, it seems. reese takes meds to signal her thyroid. she will have meds to help her adrenal glands, she takes meds to level off her sodiums... all of it. things that your body does naturally - some people just can't do anymore. [i'd like to take a min to say that these things don't seem to be because of the tumor. they are because of the surgery on the tumor -- too close to her pituitary].

chemotherapy is fascinating as well. i have, in the past, never really taken the time to look up anything *specific* about it. i knew what it was. or rather, what it was supposed to do. but i didnt, however, know that there were diff types of meds and how, exactly, it worked. reese's chemo is vincristine and carboplatin (a few people have asked). she got her first dose of both tonight. last i talked to EJ, she was laying with him on the couch/bed all cuddled up and seemed tired, but okay.

her shunt was put in a few days ago. hers is subdermal so its between the skull and brain. she will have that forever. since her skull is not totally formed back together after surgery, the fluid still comes above, a bit, and then the valve on the shunt takes it away. in 6-8weeks, it wont come up at all. its amazing, actually, to see the transformation. this past wkend, the amount of fluid up there was astronomical, but now... back to her big ol' round head.

now we get to other things -- like steroids. holy geez. even though she'll be hydrocortisone dependent - that is physiological and will only be enough to match what her body will make. but because of the surgeries, she has been on a pretty hefty dose of a different steroid.  paired with her "third spacing" which you can read about HERE, she is... um... bigger.

she came to the hospital at 22lbs. which was... small. she felt like a baby. i could pick her up and toss her around like i would a 1 year old. she was 24lbs (?) at her 2 year appt and also at her ER visit about 6 weeks ago.

but today she weighed in at about 32lbs. ::faint::  which, if you touch her, is all fluid. i tell people to think about the scenes in wall-e where the humans, who have since gained weight because of not being mobile, have to walk --- thats sort of how PT goes (which you'll see). but soon all of this fluid and steroid induced gain will go away.

like i said on facebook, this is part of her journey - so i will write about it. we make jokes and call her "sumo-reesey", but thats how we cope with the change, more or less. there is nothing we can do to change the situation we are in - so we just keep moving on.

she still looks like reese. but i just wanted to "warn" you before looking at the pics. ;)

the hilarity of yesterday included me grabbing some more fruit loops for her to snack on in her cup (hey! at least she's eating!), but she demanded the HUGE box - and why not have that for thanksgiving, right! ha!

PT is always a bust ;) but soon she'll grow to like it. especially since she'll be able to play in the playrooms soon (once she's done with her 10 days of c.diff meds).

today we moved down to oncology. what a move. fascinatingly enough, EVERYTHING in the room had to be thrown away or come with us. its also a super nice floor - with playrooms and desks and family areas and... a view :)



and then she started chemo. they said several times how anti-climactic it would be - and EJ said it was just that. i stayed all day because i thought that we would start, but they said they werent going to until at least 6pm - so i had to pick the girls up. last i talked to EJ, they were cuddling :)



thank you for your continued prayers. i will keep you updated, tomorrow, on how the chemo went over night -- hopefully she sleeps easy and isnt too sick. they pumped zofran in her before the chemo - so lets hope that works.

we have a long road to go. i am nervous, excited.... i cant even type out the emotions that i feel at all times. but for right now -- i am ready. i am ready to kill this tumor. i am ready to bring my baby home. i am ready to hold her without thinking that i'll pull a wire or hurt her some how.

we are ready for this to be our new normal.