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.
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.
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 ;)
