Monday, November 19, 2012

the before.

almost 3 weeks ago there was different "normal". i was worrying about things like costumes. thinking of what thanksgiving shirts the girls would make this year for their finger food feasts. figuring out my plan of attack for black friday.

that morning before school, on halloween, aidan and sawyer put on their new earrings and i took pictures of them before school. dangly earrings are so grown up - and they know it. and could not wait until i let them put them on.

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on halloween night, i got the girls dressed in their costumes and we headed out to downtown mckinney's "scare on the square". aidan was going to dance and hang out with her dance studio (dancer strong academy) and i talked to friends about meeting us down there.

all of the girls were super heroes. ARE super heroes, i guess i should say. but that night they donned their capes and masks, strapped on their tutus and leggings, and paraded around all matchy. i took the girls and their friend are ToTing, they danced with the fire-clowns, they did the "time warp" with the DS teachers. it was fun. reese was tired. as she usually had been. but that was so "reese-standard"... and she had that UTI... and was on abx...

anyway.

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then we headed home for pizza. and i wanted to take the girls out for some golden hour awesome photos together. i think i said in my first post about reese's tumor that i had told EJ that i called him and said "hey, i want some pics of reese in her costume to, uh, prove she was here tonight!!" and that when EJ was told the news about the tumor -- thats what he thought of. that we never got those photos. these are the ones i got before he called me in to look at her eyes.

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you can prob tell from recent instagram pics (punkfictionv4) that i will post tomorrow, that her head has been swelling. we have talked to the doctors over and over and they said it was normal. until today when she was just... exhausted. and only slept. she had her port surgery this morning (which went well) and she still wasnt the same. her HR fell a bit low and so they did a CT and sure enough... too much fluid. so tonight they are draining more out and tomorrow, she will likely get a shunt. surgery sucks. my new normal sucks. but this is a means to [moving towards] an end. so thats what we shall do. after this, the c.diff (i'll post all about those things tomorrow, but for tonight, i wanted a happier post), and her just not being... her... im ready to see reesey be herself again. to do her "cheese-cheese" dance. and to high-5 me ("good hand? ok now bad hand!" haha!!). it just sucks that this the only way.

please pray for our sweet reesey tonight, and tomorrow, that her surgery goes well. thank you for every prayer over the past 3 weeks. God is listening, sweet friends.

6 comments:

  1. My thoughts and prayers are with you, your family and most of all Sweet Reesey. The new normal of anything is never fun....except when you look back at how strong you were...how strong you are! xoxo

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  2. That picture of her with her head down on the stroller is breath taking and beautiful. The rest are joyful and gorgeous as usual. Your family is wonderful and strong and thousands are praying for you. We will pray tomorrow morning too.

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  3. All I could think of is how beautiful she is and how blessed you are and what a great mom you are, for capturing everything, as is an capturing LIFE! Reese is on my mind every day and I pray she goes home to snuggle and be with the fam. Until then, good night sweetie Reesie and be brave, the world loves you.

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  4. Amanda I am sitting here crying again for our little Reesey. I would never have guessed that I would come to love someone that I had never met so much. I love you and your family and I am praying every time she passes my mind, which trust me is a lot. I can't stop thinking of her and I hurry and get up every day to see the lastest update, hopeing that soon I will see a beautiful picture of her smiling and saying we are going home today. I continue to pray for strength for you, E.J. and your wonderful parents. Know that you are always on my mind and I will not rest until you are all back home on the couch cuddling. <3

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  5. Praying for your little Reese!

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  6. I DON'T UNDERSTAMD ALL OF THIS, BUT I AM TRUSTING GOD, I WISH THAT I COULD TAKE THE HURT AND PAIN AWAY. MAY YOU FEEL GOD'S SPIRIT, I KNOW THAT HE HOLDS REESE AND SHE KNOWS HE IS THERE. PRAY THAT TODAY IS A GOOD DAY.

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