Sunday, November 11, 2012

some days are better.

looking at the positive things are what help us.

eating something.

a smile here and there.

giving a nurse or doctor a giggle when they oh-so-desperately try to have fun with her.

it takes me so long to remember just a few days back. who stayed the night, what happened, etc, but i can type generally. its amazing how my brain went to mush, it seems. not that i didnt already live in crazy-town 2 weeks ago.

thursday night i was home and got a sweet package from a friend. with bracelets her daughter made for the girls. A and S will not take them off.

Oh @tenle  the card was wonderful and the girls love their bracelets from KK!!!


friday, my parents took A and S to the lake. my bro/sil had miller. when EJ came up to the hospital after i stayed thurs night, he brought "cheese-cheese" for reesey. that was a total win.

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the brace on her wrist is for her "wrist drop" that she's had. OT thinks this will help strengthen it all up.

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that night, i picked miller up and went to ashley's house for a bit of r&r. much needed. thats when i wrote the previous post about her diagnosis. talking about it, writing about it, venting about it --- it helps.
#millerpaige this morning. She misses me :)

saturday morning, i took miller back to my bro/sil's house for her to stay the night. i talked to EJ about it all. what they said the day before. he makes me feel so... okay. we have a plan. we know what we are going to do now and thats so much better than where we were a few days ago.

My #reesey must feel good today ;) #prayersforreesey #powerofprayer @birdiejane @ppyles


we knew we'd have to do chemo. people mention it "not being the best news" and "sorry thats not the outcome you had hoped for", but in reality - that is not at all true. its the outcome we expected. bottom line there is a large piece of tumor still in her head that has to go. just... sitting there. its not causing any fluid pockets (which, remember, was the reason for the surgery in the first place). so we just have to kill it. chemo will do that. hearing EJ tell me that thats what the oncologist said was, of course, a punch in the gut. no one wants to hear that. but we are ready to do it. ready to help her fight this anyway that we need to.

i hope and pray that she is my "normal" reesey in those weeks between her sessions. that i can forget, just for a few mins... days... that there is a tumor in that noggin of hers. that i can laugh with her, dance in the car, hang out at the store. that she can drive me crazy, make me chase her around, that she asks for "hug?" 100 times a day - and that each of those times, i will bend down and appease her request.

friday night, they washed her hair and put her into a gown. she looked so... okay. but her DI was (expectedly) returning. (DI stands for diabetes insipidis if you want to wiki that). so the endocrinologist had/has the daunting task of figuring out the dosage of vasopressin that they give to her in tiny little shots 2x a day. we still, now here on sunday, do not have that dosage correct. we'll stay in ICU until we do. until we can go to the neuro floor and then, finally, home to give her those shots daily. but DI means she can drink as much liquid as she wants so that makes for a happy reesey-badger.

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Someone is trying to get comfortable lol #reesey #powerofprayer #prayersforreesey #laidback
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saturday, i stayed and we had an alright night, i guess. but she was tired... and her heart rate was just too high. she got a slight fever. but we slept a bit.

today i got her to laugh with me with the balloons that a sweet girl, whose child is also on ICU, brought the other day when reese was hollering during PT.
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i made her laugh, later, pretending that i was dropping her bottle and being silly. she copied me. it warmed my heart so much. we cuddled (we could take her out to do that starting on thursday). she laid with me. i cant even explain to you, even through all the wires and tubes, how awesome it feels.

Who's jealous? ;) I haven't been able to hold #reesey since last week :( #powerofprayer #prayersforreesey
Taking a nap on me #reesey #powerofprayer #prayersforreesey finally some rest
#fallingasleep #reesey #prayersforreesey #powerofprayer


when EJ got there, he brought donuts. well, he pretty much won dad of the year (not like he didnt already have that title beforehand). she was legitimately excited. made me realize that this was not a normal sunday. normal sundays, we hop in the car, go get donuts and drinks, and just all drive. we look for new houses, we stop at stores, we eat lunch somewhere fatty and let the kids play -- family fundays. but being in ICU is not fun. yet watching her face light up for "nonuts" made me squeal with delight on the inside. something she knew to be normal.

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#reesey is happy that daddy brought #donuts wooohoooo!!! #prayersforreesey #gingerfight


then we took her for a walk. which meant packing her up into a wagon with her cath bag hanging off the side and traipsing through the trains... the butterfly area, the gift shop, etc... with a nurse in tow. she was unimpressed, but i am sure it was nice to get out.

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#reesey #prayersforreesey #gingerfight out for a walk in the wagon
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i kept thinking that i wondered if she thought we were leaving. sometimes she asks for the car. sometimes she asks me to put her bottle into my purse - because thats what we do before we leave the house. every.single.time it breaks my heart and i just say "soon, baby."

before i left they said she was likely (and then tested to be) anemic. her high heart rate (150s+) was likely related to that. last night we had pumped some fluids into her in case it was DI dehydration, but that didnt really help. so today, while EJ was there, they gave her 150cc of blood. she pinked up a bit... heart rate still in the 120-130s range, though. so i hope that changes soon.

the sneaky smiles that we got the past few days make me so hopeful for the future. i still cry listening to certain songs on the radio, i still hatehatehate leaving her when its my night at home, i still am so scared for whats to come.

but i am lucky. i have a support system like no other. i read what everyone writes and am so uplifted. and i have an amazing husband who won't let me down. we know each other's limits and are able to balance each other so well in that regard.

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so sleep good, reesey piecey. i will see you tomorrow! maybe i should bring donuts so she thinks im just as cool as daddy ;) nahhh... wouldn't even work. ha!

and i just wanted to say how amazing some e-friends are. i was mailed this map. and map pins. and am getting postcards from alllllll around for aidan and sawyer to see where everyone is praying for and cheering reese on from. its amazing. if you want to send one - you can send them here:

#prayersforreesey #gingerfight best idea ever. I was sent a map and pins. And postcards are coming in. So A and S can see exactly where the love for #reesey is coming. Thank you guys so much!!

PO box 356
Wylie, TX 75098-0356

a wonderful friend is collecting them and giving them to me when she sees me :) tonight, A and S looked at the map 100 times. swoon.


7 comments:

  1. I'm watching for updates and cheering your little Wonder Woman on. So much love to you all...
    TXchick

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  2. So good to see her smile! Focusing on the positive is the way to go. I also thought you might get some strength from these quotes, but it seems you are already there-

    "What happens is not as important as how you react to what happens." -Thaddeus Golas

    "The best security blanket a child can have is parents who respect one another....."
    -Jane Blaustone

    You guys are doing awesome, keep supporting each other.

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  3. What a sweetheart <3 Sending many positive thoughts to you all!

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  4. Those smiles are just precious.

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  5. I am so sorry to hear about Reese. I know you from the bump, my first and sawyer are close and I had my second close to miller. I can't imagine what you are going through. My thoughts and prayers are with you and your family.

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  6. Sending prayers for you all.
    FTSP :)

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  7. <3<3<3 love her beautiful face! lots and lots of prayers for you all! xoxo

    p.s. glad the girls love their bracelets! <3

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