Miller's FDOS ever.

"oh mi'wer" (as reese would say)... today was so fun for her. i knew she'd love going to MDO.

i usually do not have my kids start until the fall after they turn 2, but going to therapy, for reese, on mondays and wednesdays is just miserable for miller. we are stuck in a waiting room where i have to keep her corralled for an hour.

i took miller out for the cliche FDOS pics this morning, like i've done for years with the other girls.

eta: i wanted to add - those shoes are 6-9mo sized haha tiny miller feet!!


then we went in for breakfast. mini pancakes. they start at the table. then end on the floor, picnic style. meh. stealing each other's food.


we got to the school and i tried to get a pic of them together. ta-da. ::snort::


walking down to class...

woohoo!!


then i took reese out and they played for a bit. i figured reese would be sad leaving miller - but she does understand the concept of "we'll be back to get her" since we do that for A and S. this way, though, we could talk later about the things miller might be doing. like playing babies :)


then it was time to go...


miller said bye-bye. reese and i left. then reese cried for a second until we decided to "go shop!!" hey, it was her idea!! lol then miller even slept at school!! (IG - punkfictionv4)



this week has been nice. every day has, really. we are very busy. running around town. i still worry all the time, but reese feels good. my belly is growing. the kids are happy. next week is chemo (month one of a new round) and we're ready to go -- i am still in the between of "c'mon end of chemo!!" (next march) and "no no. don't end! there's still tumor! will this be enough?!"

but that is in God's hands. :) i did want to let you all know that we'll be walking in the National Brain Tumor Society's Walk on November 9th :) WALK WITH US!! join our team!! we can rock our "cheese-cheese" shirts and rub bald heads lol hope to see you there!!

yawn with me.

i havent posted in a few days for no other particular reason than being... tired.

i am exhausted.

tonight its for good reason, though - as last night i sat with reese and snuggled from 10pm - 2am. on the couch/bed, just holding her like a baby... watching her sky high heart rate fall slowly down into the normal range as she laid with me.

but generally, i just am doing so much. EJ, too. he is balancing working and the hospital, then coming here with the kids. i have the kids, getting out xmas images for past clients, and then to the hospital i go as well. we have dance class, events, school, etc. and im tired normally... but add in reese at the hospital and then i become so emotionally drained as well.

we have been "living" at the hospital for over 4 weeks. almost a whole month of questions, answers, partial answers,  more questions, surgeries, holding my own child down for tests, holding her for cuddles...

since i last posted, reese has been on the oncology floor as we watch her bounce back and forth between "so totally okay that youll go home this week!!" to "well... we have to wait and see...".

she has had 2 cultures done on her brain fluid (tapped from her shunt) to make sure that that shunt was not infected as she had a fever and her HR was so high. i cried and cried the other night in bed, laying next to aidan, hoping she didnt hear me... thinking that if her shunt was/is infected, reese would have to have surgery to take it out, drains from her head taken while she was on abx, and then surgery again to put it in.

we are still waiting on the 2nd culture to be cleared, but the first cultured just showed a bit of blood in the fluid so it came back "abnormal". this morning neuro had told me that "so far" her cultures were clear from bacteria. but every culture means 48 more hours in the hospital.

on saturday, i took aidan and sawyer to downtown mckinney because aidan had to do window dancing at the dance supply company with her dance studio.

they had to wear make up.

then we went and got #cheesecheeseforreesey for lunch.

then we hung out and watched her be the angel that she is.

i took them to the hospital to see reese and swap with EJ. aidan did a craft for reese that child life had left for her to do - reese giggled as i made hilarious "gobble gobble" sounds when they played.


a friend from college gave me this doll. she had asked a mutual friend's mom to make this for reese and holy moly do i love it.


i watched her while she slept.

and then again while she woke up.

EJ spent the first few days of the week with her. dealing with all of those ups and downs. he always says he gets the hard nights. i tell him thats bc God knows he can handle those the best.

yesterday, after all of the drains, drama, questions, etc, i came back to stay the night and love on my sweet girl. EJ said goodbye to her for the night in the best way possible -- she brushed her hair, which, ironically was the thing she hated most 1 month ago. but now, its one of the main things that calms her down completely.



then he stole a kiss.


medically, her sodiums go like this --- if they are HIGH, she needs to drink free, regular old water and not things like pedialyte, etc. if they are LOW, she drinks those things with electrolytes. right now we are trying to figure out how much she needs, exactly, per day to stay in the normal range. at home, we wont know the actual sodium numbers so we will go off diapers --- the DDAVP will be given every 12 hours. at 10-12 hours reese will start to "pee out" -- which makes the *water* come out but the sodium stay -- and then her levels will go higher... so then the DDAVP makes her sodium drop. if she doesnt pee out, then we wait a bit because we dont want to drop it too low. if she pees out to early, regularly, then we might have to adjust the dosage... and on and on... i dont think there's ever going to be an answer for it all... we just take it as it comes and as it happens. so for instance, earlier this week we were pedialyte/sure only. while i was there, none of that could be used. i dont want her to go home with a feeding tube (and since we know she still has a thirst mechanism since she does want to chug and self-regulate when she's peeing out), we just have to make sure she drinks *enough* over all to sustain it.

we had PT today and let me say, its the little things, like sitting up on her own - that make me so happy.


tonight i am at home. with ASM.

i did want to say a special thank you to some friends, though. the other night, i felt so broken. i begged that God please spare my sweet girl from more surgeries. that she didnt deserve that. that she has been through so much and been so strong. i cried myself to sleep. yesterday, my 2 best friends came to my house and delivered the most amazing gift that i have gotten. its a book. pages and pages and pages of my friends from our photography messages board with photos that they took to send to reese -- uplifting messages, bible verses, lyrics, song quotes... just... amazed.

HERE is the whole book.
HERE is the video that ashley made of me receiving it.

there has been a special place in my heart for these women for years -- and this is just one of the thousands of reasons that i love them.

thank you for every single gift for the girls, postcard that they can post up on our map to show who is loving and praying for reese daily --- aidan and sawyer just melt.

tonight reese had her 2nd chemo. she fell asleep on EJ afterward. and is doing okay right now.

please keep praying for our sweet girl. sweet dreams, reesey.

i heart faces: hugs and kisses.

sisterly love. at just-turned-5, aidan is the epitome of a big sister to her 3 little sisters. and bathtime is no different.

check out some more entries at IHF!!

hustle and bustle.

ahhh xmas eve :)

i have spent this week:

eating.
wrapping.
baking.
more eating.
relaxing.

none of those things are conducive to my 33w pregnant behind ;) but they are fun.

wednesday. amazon had puked in my living room, but we wrapped and then let them play in the boxes.






thurs. 33 weeks pregnant. blech.


A and S say they are getting married and A carries sawyer like this LOL it makes me laugh. "ok now we kiss!!"


reese running to aidan for a hug. she says "hug? hug?" without the g ;) and puts her arms out and goes.


friday. i have a filler pic for now ;) the kindle touch EJ got me and already gave me for xmas ;) cell.


today. we went to the mall :) good times. it actually wasnt that busy (cell pics)








and then aidan and i made reindeer food ;) we'll all sprinkle it tonight!