half way.

We are halfway through the school year. 

In a few hours, I will pick up my 3 oldest from elementary school and we will start christmas break. 
I thought I would worry every day that Reese was at school - but I didn't. I thought she would need so many accommodations to be with her friends, but she doesn't.  I thought my days would be filled with emails explaining things to teachers, but they aren't. 

Everything is so wonderful. I went to parties this morning, but per the usual, only R really wanted to take as many pics as I wanted to ;)

I love their poses and their giggles. I love watching the kids in the class interact w my girls. I love seeing Reese's friends come over and hug her or rub her back when she got sad that I was leaving. I love it all. 

We are about one more month away from our next MRI, in January. I think I mentioned before that we aren't going to stop chemo after a year, but ride it out for a little bit longer - since her side effects are nil. So we will hit a year on this chemo in the next few weeks and I can't believe how time has flown. 

One day last week, the school called me because Reese was acting tired and apparently she said her head hurt. I ran up to the school, wanting to throw up the entire drive. I get there, she hops into the car and shrugs her shoulders when I ask about "what hurts?" I ask her about her head? nope. She just sort of smiles as if she just wanted to spend the day with me. No nap, no complaining, nothing all afternoon - except "I have some boogers". While she did get to come home early and hang out with me, it made me remember that we are not, in fact, normal. Other kids go home because they don't feel good and their moms don't cry and want to throw up on the drive there. Just me. Other moms take their kids home and put them into bed and hope they don't have to run to the doc, but I do neuro checks and make her squeeze my hand w bad arm. 

When everything is going great, the rug that can be pulled is so very large. It is easy to forget it is there, but just a smidgen of movement and I feel like falling.

We are filling the break with the zoo, aidan's 9th (!!!) birthday, playing outside in potential 70 degree weather. We are going to bake and do crafts and wait for santa to come. So much more going on than worrying. Hundreds more smiles than tears. 

home.

we have been living for 6 weeks at dallas children's. for the next 15 months, at minimum, we will be there very often. in between weekly chemo treatments, we'll have endo appointments, neuro scans... and [while i praypraypray not] possibly emergency trips for fever, puking, or something out of the ordinary that worries us.

but today, we officially moved out from our original stay.

while i will have a video of our "going home" sequence soon, for now i have the past 24 hours while i was at the hospital with her... with a few instagram thrown in.

today all of the doctors came in to chat - neuro came in and i got a little misty-eyed seeing the entire team of angels who have worked on my sweet girl - the original craniotomy, drains, shunt and shunt revision... i told them that i did notice that reese, who i didnt notice being so "side smirky" recently, had started to do it more --- but her facial nerves are where the tumor is and we'll have a can in a few weeks.

i asked endo a lot of questions last night about DDAVP timing. she has been needing it longer than 12 hrs past the original shot time. which means we are moving around the clock - which blows. lol but for now, its okay -- if this keeps going, we'll be adjusting the dosage, likely.

oncology came in and basically said "see ya next week!!" for chemo. but we're all proud of how well her body seems to handle it.

when i got there yesterday, tossed her in her new minnie PJs and we hung out and we ate pizza (well, she ate a ton!!)-- off the monitors, and then did some chemo.  :) we had breakfast this morning and waited for the go aheads.

EJ came up, i went and got ASM and then came to the hospital.

tomorrow is back to normal. well, as normal as we can be. EJ will be working from home (he has been working at the hospital, of course, as well). i will be with the kids. we'll prob do a lot of gameroom playing :)

2 nights ago, aidan broke my heart and said she didnt think reese was ever coming home... i am glad that we were able to bring her home to her sisters today. they need each other. and love each other.

when reese got here, we put her on the couch and i brought miller up - and reese just kept wanting to hug her. she asked to move to the ground (which hasnt even been something she does in the hospital) and then she sat in EJs lap and laughed and laughed while the dogs came up to her. she watched aidan and sawyer play and miller jump in the jumperoo. we gave her a bath, found PJs that fit (giggle. she's too big for her old ones haha), and put her in the pack n' play in our bathroom with all of her favorite, cozy things. she fell asleep in only a few mins... max.

tonight we'll keep doing her meds, give her DDAVP at midnight ::yawn:: and watch for diaper schedules.

but, no matter what, we are skelte, family of 6, under the same roof tonight.

so until tomorrow, all i can do is say thank you. God hears our prayers. and He brought our baby home tonight. she has a lot of things to go through until its a memory -- so i beg you to continue praying for our sweet girl. for her safety. for our sanity with our "new normal". for her body to heal.

miller is 7 months.

ok she was last week, but i didnt get around to posting this. but now i am ;)


what a awesome baby, i have. i mean, she's happy and loves to laugh.


her favorite past times are bouncing her in jumperoo (funny: i hollered at A and S to "stop bouncing her!!!" bc she was going so hard/high. they laughed, backed up. and BAM - miller was going nutso all by herself lol oops)


stats:
height: 25.5" (23%)
weight: 12lbs 10oz (< 1%)
head: 16.5" (20%)


now i'll tell you a bit about her weight ;) yeah, she's tiny. she does everything on time - her milestones are on point, she's happy, healthy, eats well, has good diapers, but just... small. so for the next month, we are to give her some formula after i BF her. and put flax seed oil in that (and then also her gym bottle). THEN with her food (she's all table food), mix coconut oil into that! bam!

now, we all think she's way bigger than she has been :) so i am not too worried. i love my tiny little bug!

as for the rest - like i said up there ^^^ still BFing and of course, she's obsessed lol her newest "trick" is now spitting (raspberry-ing) my boob when she's done. haha


sleep sort of sucks. but not too bad. she goes to bed at, like, 7. maybe earlier. then she's good until about 1am. which would be fiiiiine if i went to bed at a decent hour. but i dont. i stay up and read ;) then she sometimes wakes at 4am and then i keep her in my bed until i have to go get aidan up for kindy. then i drop miller down, get A ready and send her to school with EJ. then S comes down, i feed her and finish morning duties, get R and M, and then feed them :) so it works out nicely.


miller just loves life. and im soaking up every moment :) this is the first time that ive actually LOVED the baby age. ive always said that i am a "toddler mom", but i think thats bc i am always so ready and excited for them to move to the next stage... sitting up, walking, talking... but with miller, im just like "nooo dont do thatttt!!!" i just want to keep her little forever haha


anyway. more pics. for your miller (de)lite. <--- see what i did there? hardy har.


see ya later cutie pie :)
 

squeaky clean.

reese and miller bath time :) :) :)



all clean!

miller is 3 months.

peek-a-boo.

 

she is so smiley!

now she is about 9lbs? and she wears 3mo onesies usually. mainly for height. size 1 diapers.

she goes to bed (she sleeps in her crib in aidan's room) at 7:30pm ish and sleeps, usually, til about 3 or 4am. sometimes she wakes up randomly at 1am or so, instead, but thats always my fault lol if i let her take too long of a nap in the evenings - she does that. i let her come into bed and eat at 4am usually... we like that ;)

still BFing like a champ. eats every 3 hrs or so - sometimes more. but it just depends if ive disrupted her sleep lol if so, she'll act like she's never eaten before and want to nurse again ;) we pretty much BF everywhere now - im pretty sure all of dfw (and ohio!) has seen my side-boob.

she has the sweetest little cry. and is happy to sad in 2.2 seconds. she'll be there laughing and giggling and then BAM. she's done and starts to pout. even when switching sides during feeding -- id better move fast enough! she also hate the car. or rather -- stopping in the car ;) so that brings tears as well. aidan sits next to her and can hand her the paci, but still.

she's super content just looking around -- and still smiles immediately when a sister gets into view. they like to tickle her and give her kisses.

my fave thing of hers are her ears. hehe they are so cute and tiny and stick out like a little muffin. and so her.

but everything about her is so tiny and perfect.

so happy 3 months, miller paige. i am loving watching you grow.