Thursday, November 29, 2012

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.

Guess whose HR goes down with mommy?! #reesey #prayersforreesey #gingerfight

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.

#aidkaid and #sawyergrace are ready for the day. Make up and all bc Aidan has a #dance thing this morning

then we went and got #cheesecheeseforreesey for lunch.

#sonicrun #cheesecheeseforreesey #gingerfight #prayersforreesey

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

#aidkaid as a window dancer lol

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.
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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.
#reesey #gingerfight #prayersforreesey #widn #myview

and then again while she woke up.
#reesey was laughing as sh made me run around the bed "other side!" Then "other side!" :) #gingerfight #prayersforreesey

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.

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#wakeupbuttercup #gingerfight #reesey #prayersforreesey morning time!!!

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.

#millerpaige bath time!

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.



  1. That book is awesome! I love it. What a great group of friends.

  2. i just looked at the whole book and OMG, i'm in tears. your sweet babies are all in my prayers...and i've saved some special ones for you, and ej, and reese. and man, you can just see her love for y'all when you're holding her, can't you? she's an absolute star. i love that little girl. hang in there amanda<3

  3. I love your photography board also!! I love that they have you in their hearts and prayers and you are never alone. Know that God has placed his prayer warriors around you and we are diligent to be in prayer. I even wake up during the night and pray or will come and check for an update. I love when i can go to work and know your progress. Aidan and Sawyer, what precious little angels you are. It is Friday and as i look forward to 48 hours of another reality away from work I pray that your reality will be the "perfect pee" for our Team Reesey! Every day they get closer to the right solution. i pray for those culture results. I pray for you sweet mommy! Much love and many many HUGS!!

  4. What a beautiful family you have. Reese is in our prayers, as well as all of you.

  5. That book is soo beautiful. Keep fighting girl!!

  6. I have never met you, but have mutual friends of yours. i pray for you, your family, and your sweet girl Reese. i pray that she beats this and bounces back better than ever. you are one strong mama.

  7. What an amazing gift, I teared up watching your reaction. Those are some friends of gold :)
    Sending Reesey, you and the fam good thoughts and prayers tonight. The site looks great!

  8. Hi :) I used to be on the Bump boards way back (KaitlynDC6), and came across your IG account. I just want you to know that I've been praying for your family and Reese. She is so lucky to have all of you.
    No parent (or child, for that matter) should ever have to go through this. We recently had a scary health issue with our daughter, and it became very clear that worrying/not knowing what is going on with your child is the single hardest thing we will ever go through. I'm praying for Reese's healing, peace for you and your husband, and for comfort for your sweet baby.
    Lisa (Seattle, Wa)

  9. Been following your blog for a while now! Love love love it!!! The video and book definitely made me tear up! Prayers are going strong for your family and especially Reese! God bless!

    Jessica (Frisco, TX)

    P.S. Love the new layout!

  10. hang in there sweetie. we are ALL still praying. xoxox

  11. That book is amazing and so are your friends. Tons of tears reading through this post. Praying for your family and your Reese!

  12. That book is amazing and so are your friends. Tons of tears reading through this post. Praying for your family and your Reese!

  13. What a beautiful book! Please know that I pray for you and your family every night. Reese is incredibly strong (just like her mama) and I know you and your family will pull through this. HUGS!!


  14. Hey, just stumbled on this - this is incredible. I know we've never met outside of Facebook, but you guys are in my prayers. xoxo