Saturday, January 12, 2013

home, hospital, hair.

i had grand plans of posting a few days ago about last weekend and such. life got in the way so here i am updating with a large percentage of IGs. ha.

first, i wanted to go back and post about something that i just got photos for. december 17th, ashley (with help of all the wonderful people at the school/church) set up a candlelight prayer meet-up for reese. that was the night before the resection - when her sodiums were low and we had to go in early.

brittney davis photography (also an amazing friend of mine) took some photos since i could not be there. just looking at them made me remember how many people just love reesey. i am surrounded by awesome people. and thank you all who went - and those who lit a candle and prayed for reese -- wherever you were.

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late last week, i realized i needed to go to the store. and now, with 2 kids that can't walk, i headed to kroger where i can put two kids on the top of the stroller and then 2 kids down below :) reese was so happy sitting my miller and buzzing around.
Look how happy #reesey is!!! #lifewith4
Told you. #happiestbabyever #reesey #gingerfight


the creative mind behind Miah Rhodes sent reese these headbands and she looks so cute in them!!



on saturday, we basically just got in the car and drove around. its what we do when we need to get out of the house but have no where to go (or can't, for that matter). it was cold and rainy out and we didnt know about reese's counts so we didnt want to take her around a bunch of people. later that day, aidan had dance practice - after, i told her we could go get fabric for her sewing machine that she got for xmas! then ASM and i had a date ;)

#millerpaige ❤❤❤ #sawyergrace #aidkaid #dinnerdate 
i am not good with a sewing machine. lol even a kids one ;) so EJ helped with that. swoon.
aidan ej sewing color2 aidan ej sewing1 
the beginning of the week we just hung out, had chemo clinic, and had some sillies.

#sawyergrace has bad #bedhead #thisllbefun "Whoooo wants a #cheesecheeseforreesey ?" :) #reesey and #sawyergrace say "ME!" #reesey and I at #chemointumorout #gingerfight #ironicshirt #sawyergrace picked #millerpaige 's outfit out lol #sawyergrace and her #cheerface #11months #whodathunk #millerpaige #bfing #aidkaid fell asleep on the couch. Sweet baby. Your daily dose of #sawyergrace and her dressing herself #ilivewithkesha #sillygirl #danceparties

wednesday night, we had bathtime. miller was being silly.

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 EJ got reese undressed and she shivered. she didnt feel warm. she didnt act sick. but he thought "hm." and took her temperature.

101deg.

protocol says we have to call children's. we did. took her temp again 100.8 in the other ear. they told us to go to legacy children's (the one closer to us) and so EJ packed her up. when they got there, her fever was "nothing" - which is 100.4 or lower. but her ANC had dropped from the day before when we were at clinic. so they sent us to dallas - which meant an ambulance ride.

hospital trip story very short -- we were there til last night. they had to wait until her ANC started trending back upward. we were on isolation the whole time bc she had a flu culture - and while originally it came back negative, the "whole thing" takes 72 hrs. so until that was done (we left before it even hit that), they couldnt let us out of the room. that was miserable. i went up early on thursday morning and stayed til last night.


Me and #reesey today :) #gingerfight #myview #downtowndallas #thehospitalsucks #reesey #sleepybaby #thehospitalsucks #gingerfight Annnnnnd #myview for the morning #thehospitalsucks lol Trying to put her hat on with BOTH hands :) #reesey #gingerfight #teaparty with #reesey in isolation #thehospitalsucks #gingerfight   
 
to see how much fun we had --- reese with cups. oooorrr her breakin' it down :)

when we left, her ANC was higher than it was daaaaayyys ago. which is awesome. today we got to enjoy a normal saturday. 

@jtabor31 eeeeekkk!!!!


now, the sentimental, sappy, ::siiiiigh:: part of this post. 

this week reese was sleeping on me and when she got up, there was a lot of strands of hair. she gets it in her mouth all day bc it falls out all day. and its itchy and it tickles. ive been told several times that it can also hurt.... so we wanted to help a bit. this will at least help it from getting in her mouth... til its gone.

i didnt cry while i video-taped it. i cried while rewatching the vid though... sometimes i forget. 

we have an MRI on the 22nd. before we do A2 of chemo. i am scared. what if its bigger? she acts so awesome every day... this week dr. b came in and talked about the MRI and said if it was bigger, then we'd have to do something else.... 

it has to be the same or smaller. i pray every day that it is. 

but for today... we cut reese's hair. something small - but so big. it reminds me of whats in her noggin.


reese's hair cut from amanda skelte on Vimeo.
 
#haircut #reesey #gingerfight hopefully no more itches :)

24 comments:

  1. Oh dear goodness, I am a blubbering idiot after watching your video. Hang in there, Mama. I think about each of you daily even though I don't personally know you. Praying.

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  2. She's beautiful. We continue to pray - as does our circle of influence - for a smaller tumor. <3 you guys.

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  3. That Kesha dancing is amazeballs!!!! She is the cutest thing EVER!

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  4. I'm over here sobbing and snotting like a baby!:) Your posts get me every time! First off, Reesey is just beautiful with or without hair. And that noggin' of hers is going to be fine. You hold on to faith and hope! I will continue to pray each and every day for good news. The unknown is torture. I HATE it for you and your family but NEVER give up!!
    Second, there's nothing sexier than a man and a sewing machine....that's what I tell my husband!:) Somehow I missed the sewing/creative gene in my family. Thank goodness, God gave me a man with some talent in that area!:)
    And, last but not least, ALL of your children are beautiful! Love seeing all the pictures of them. Thanks for sharing!

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  5. She looks like she is so much more comfortable now. EJ was so gentle and careful. Stay strong beautiful lady and know that many prayers are being said for precious Reese and all of the family. Your strength and grace are very evident in allowing us to be part of this very hard journey.

    Prayers, love & hugs,

    Sara

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  6. Cue tears...
    I am so touched by the closeness of your family.. and how strong you are all for each other.
    You Skeltes, not science or medicine are what keep her getting healthy.

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  7. What a wonderful daddy your husband is. Always praying for Reesey. XO

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  8. We do not know each other....but I pray everyday for your baby girl. So sad that she has to go through all of this. That stupid tumor will be smaller...and your baby will be better....and she will have an amazing story to share. She is a fighter.

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  9. You all are amazing. And boy does she pull off that hair cut! So mod! ;) we are praying praying praying.

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  10. Oh goodness that video. Tears. Still saying prayers and rocking our *GINGERFIGHT bracelets every day.

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  11. you all are fighters and warrior princesses and inspire me every single MINUTE. praying, praying, praying and sending endless amounts of love and light your way.

    xoxo.

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  12. Praying for that precious girl of yours. ♥ Her spunk and sass are an inspiration.

    - Sabra

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  13. You guys are amazing!! I'm sitting here tearing up at how gentle EJ is with her as he cut. Thinking and praying for you guys.

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  14. Thinking about your family every day. You ALL are amazing.

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  15. Reese looks beautiful. Praying for you and your family every day.

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  16. I've been following your blog for a year and a half? now and your family is truly amazing to me! I am praying everyday for your sweet girl, for you, for your hubby and for your other sweet daughters. The Lord bless you and keep you.

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  17. Thinking of you and your family everyday and praying for nothing but the very best. You are such an inspiration. ((hugs))

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  19. sobbing and smiling. Love and light from Chicago. Blessed be.

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  20. One nice thing... she looks damn adorable with that short hair!!
    Prayers coming your way lady.

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  21. Well that just makes her beautiful eyes pop even more :) She is a beauty!

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  22. Aww look at her being so good <3 God love her little heart.

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  23. I can barely see the screen through my tears... But they are happy tears. God bless you Amanda, EJ and ASM.... Reese is a lucky lady to have you. I have been following your story since day 1 and things will only get better! Your strength inspires me and all that love you... Xoxo

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  24. Couldn't watch this the other night because it was on my phone. Love the video. The song is perfect. You're a beauty, Reesey. Bald is beautiful! :D & my girl is currently signing I love you to Reese as she watches. AMAZING!

    Shaylen
    http://custompopportraits.com/

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