Monday, December 10, 2012

the best 5 days.

so we have been doing our "new normal" for 5 days now.

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5 days of wondering "wait, was that peeing out? did she breakthrough?" "did you mark down that 150ml drank?" "how much did that diaper weigh?" "are you going to wake her up while i get the meds ready?" and so on...

my best friend, ashley, from Lily Toes Photography yet again outdid herself by putting THIS video together of our going home. i cry every time i watch it.

you can see in the video how weak she is. i want to remind people that she is not actually... sick? i mean, she doesnt feel sick, really. she is just weak. she cant stand, cant walk. she can only sit for a while before needing to lay back. she needs help from going from laying down to sitting. as we were told, we trying to do things with her during the day -- she spent weeks laying down. while tv and relaxing is good for the soul and we do that often, sitting up, playing, trying to stand, and being interactive is best for healing.

she laughs. she smiles. she welcomes everyone that comes into the room with arms out and a holler of their name. she hugs miller all the time. she loves petting the dogs. she's been playing blocks and other toys.

on a PT front, things she didnt do until home - reaching forward, rolling over on her side, trying to sit fully up, stacking blocks. and, well, playing, in general. PT and OT had a rough time, but within a few hours of being home, reese was back to what she knew.


the last few days have proven that family and home is, indeed, the best medicine.

thursday night, we gave her a bath and put her to bed. PJs open so we could sneak her ddavp in later.

#ohhai #gingerfight #prayersforreesey #reesey #millerpaige

#reesey #gingerfight #homeagain


on friday, we played. lots of playing. sisterly love at its finest. with some cheese-cheese thrown in.

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#dayone #cheesecheeseforreesey

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#dayone #laughing with sisters #sistersarethebestmedicine

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saturday morning, we brushed her hair as best as we could and put a clip in and set out to get her out of the house. she needed bigger shirts (as you can see bc this one fit her so we kept her in it haha).

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what a happy girl she was all morning. just getting in the car and sitting in a stroller for a few mins had her smiling from ear to ear.

We made a quick run out today. We kept #reesey in the stroller so on one could be close to her. She just smiled from her tent just happy for "normal"  only a few mins out, lot of sanitizer, and a #cheesecheeseforreesey makes for a happy baby



we got home and brought out all of the christmas decorations. i have been waiting for this for weeks. just the entire family getting ready for christmas. the girls were silly.

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We are finally #decorating #christmasiscoming

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#christmasiscoming #decorating yayyyy!!!



then, that night, i took my favorite photo of all time.

xmas card1

then i found aidan asleep like this. lol

#bestsleepingpicever #aidkaid #scoozdog #yesthatsalaundrybasket omg I love my kids.


on sunday, my brother and niece came over and brought goodies from his MIL. so later, A and S decorated gingersnap cookies while miller made a huge mess haha reese looked a bit more like herself :)

#reesey even wanted shoes :) #gingerfight I don't know what we are doing today, but even driving around would be fun for her

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and reese snuggled.

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then we had a cozy night :)

#foundtheremote #reesey #gingerfight

#kidinmybed #gingerfight #reesey snuggles!!!



this morning was business as usually. i got aidan ready for school first.

#schoolday #noshedidntcutherhair



we did the rest of the morning duties and then it was naptime, apparently.

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well not the whole time

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this afternoon we picked aidan up from school and then, before dance, aidan brushed reese's hair. reese so so loves that.

#pickuplane #sawyergrace #reesey doesn't want us bothering her while she eats her chicken lol

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and then here we are. 5 days in. 5 days of having the skelte 6 under the same roof.

we have a long long road. we have 7 types of meds to give on various times, multiple times a day. which, by the way she hates. we have chemo once a week for 15 months. we have PT, OT, ST multiple times a week. and then we also have life. regular, boring, day to day crazy town life.

the prayer warriors that have been thinking and praying for reese for the past 6 weeks are nothing short of amazing. the donations, the gifts, the postcards... i cant say enough times how grateful i am for everyone. you look at life differently when you see the type of community you have around you -- full of love.

so now, ill go give reese more meds, wait for her ddavp shot, cuddle on the couch, and go to sleep - knowing that i'll see my baby immediately in the morning.

okay and maybe in the middle of the night ;)


14 comments:

  1. It's amazing to me how my heart has been touched by a sweet girl and family that I have never met! We pray EVERY day for all of you. Home seems to be doing the trick for Reese! :) She looks great!

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  2. love this. I am so happy to see all of your gorgeous girls under the same roof once again. <3 prayers from us to you...for that amazing, blessed family of yours. xoxo

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  3. I fell apart watching the video. I'm so happy she's home, lots of love to you all <3

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  4. Amanda - your girls are just wonderful. All 4 with such a wonderful bond of love. Blessings and prayers to you all the Christmas- Joanne xxx

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  5. The love you all have for each other is so apparent! I'm so happy that this new "normal" is going so well so far. Prayers that these past 5 days are a glimpse into how the next weeks will go and even getting better!! ❤

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  6. Tears...I'm so happy your sweet girl is home with you. It made my heart smile to read this post. Still sending lots of prayers up for little Reece and the whole family.

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  7. I am SO SO glad that the last few days have been so uneventful--I have been wondering and praying that everything has gone okay. The video had me in tears--thank you all for letting us share in this journey.

    Continuing to pray for you in Colorado--Robyn Schulze

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  8. She looks sooooo, so good! I'm so glad she's finally home with yall. You can tell how much she's loved by her sisters and being in their company obviously makes a difference. I'm glad things are going well at home =)

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  9. The video was so amazing, brought me to tears. I'm so happy you have your family all under the same roof again! The shot of the kids in front of the tree is so precious, it brought tears to my eyes too. Welcome home Reesey!!

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  10. I can't explain in words how happy I am to know you are all under the same roof again. I know it makes a difference to be in your comfort zone and I can see it in these photos. Much love and prayers.

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  11. I'm a friend of one of your clients and she shared your story with me. I've been rooting and praying for you guys and for little Reese. Like you, my family's world was changed forever, when my 8.5mo son was diagnosed with Infantile Spasms at 5.5 years old. He had has numerous EEGs, tried all sorts of medications, including ACTH (hydrocortisone--which also made him really chubby), and regressed developmentally due to the catastrophic nature of IS. We had to adjust to our new norm as well, and it was very difficult. He's working with an early development teacher weekly, as well as PT weekly. He may also need OT/ST soon when they re-evaluate him at 9mos. It's been a rough road and there's no knowing if things will ever return to the "normal" that we had known before, but through our little ones' experiences, our eyes are opened towards a whole new realization--that we never knew true fear until now...but we also never knew real hope until now. It's amazing how strong and brave these little kids can be, and I'm so glad to see that Reese is finally home. I know that the road ahead is scary and unknown but I continue to pray and hope for healing for our little ones. Much love to you all.

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  12. that picture...your favorite of all time...is amazing.

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  13. I love that tree picture. These are all making me cry. So much love. Reese is so so loved.

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