Thursday, December 6, 2012

home.

we have been living for 6 weeks at dallas children's. for the next 15 months, at minimum, we will be there very often. in between weekly chemo treatments, we'll have endo appointments, neuro scans... and [while i praypraypray not] possibly emergency trips for fever, puking, or something out of the ordinary that worries us.

but today, we officially moved out from our original stay.

while i will have a video of our "going home" sequence soon, for now i have the past 24 hours while i was at the hospital with her... with a few instagram thrown in.

today all of the doctors came in to chat - neuro came in and i got a little misty-eyed seeing the entire team of angels who have worked on my sweet girl - the original craniotomy, drains, shunt and shunt revision... i told them that i did notice that reese, who i didnt notice being so "side smirky" recently, had started to do it more --- but her facial nerves are where the tumor is and we'll have a can in a few weeks.

i asked endo a lot of questions last night about DDAVP timing. she has been needing it longer than 12 hrs past the original shot time. which means we are moving around the clock - which blows. lol but for now, its okay -- if this keeps going, we'll be adjusting the dosage, likely.

oncology came in and basically said "see ya next week!!" for chemo. but we're all proud of how well her body seems to handle it.

when i got there yesterday, tossed her in her new minnie PJs and we hung out and we ate pizza (well, she ate a ton!!)-- off the monitors, and then did some chemo.  :) we had breakfast this morning and waited for the go aheads.

#reesey #gingerfight sweet baby

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Eating #pancakes on the couch #chemointumorout #goinghomedaytrial2 #thatstheport



EJ came up, i went and got ASM and then came to the hospital.

#gingerfight

#onourwayhome #gingerfight #prayersforreesey #reesey #lifewith4


tomorrow is back to normal. well, as normal as we can be. EJ will be working from home (he has been working at the hospital, of course, as well). i will be with the kids. we'll prob do a lot of gameroom playing :)

2 nights ago, aidan broke my heart and said she didnt think reese was ever coming home... i am glad that we were able to bring her home to her sisters today. they need each other. and love each other.

when reese got here, we put her on the couch and i brought miller up - and reese just kept wanting to hug her. she asked to move to the ground (which hasnt even been something she does in the hospital) and then she sat in EJs lap and laughed and laughed while the dogs came up to her. she watched aidan and sawyer play and miller jump in the jumperoo. we gave her a bath, found PJs that fit (giggle. she's too big for her old ones haha), and put her in the pack n' play in our bathroom with all of her favorite, cozy things. she fell asleep in only a few mins... max.

tonight we'll keep doing her meds, give her DDAVP at midnight ::yawn:: and watch for diaper schedules.

but, no matter what, we are skelte, family of 6, under the same roof tonight.

so until tomorrow, all i can do is say thank you. God hears our prayers. and He brought our baby home tonight. she has a lot of things to go through until its a memory -- so i beg you to continue praying for our sweet girl. for her safety. for our sanity with our "new normal". for her body to heal.

21 comments:

  1. So happy to hear she is home, with you all, where she belongs. Hope you have an easy night!

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  2. SO HAPPY she is home!!! There is no place like HOME! We will continue to pray!!:)

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  3. Ohhhh my heart is sooo happy for you!! I know things aren't going to be "easy peasy" but I can only image the healing that's going to go on now that Reesey has her sisters, her doggies and BOTH of her parents-- all in HER home!! What a great day!! Praying each day from here on out only gets better!!! Much love!!

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  4. Beautiful! We're all over the moon delighted for Skelte party of 6!

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  5. The cutest redheaded sisters EVER are all back together! So happy for your family and we will continue to keep you in our prayers! <3

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  6. <3 love that pout face! this is such amazing news! it's been such a long month...we are still praying for you all! xoxo

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  7. I'm not going to lie, this made me cry. I'm just so freaking happy that that baby girl is home. I truly think being home where she belongs, surrounded by the love of her family, is going to be the most healing thing possible for her. There are happy tears coming from this ginger for all of yours. <3

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  8. So happy for you all! Continued prayers for you as you take on this new "normal".

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  9. so very very happy that y'all are under the same roof. thinking of you all.

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  10. Just have to add another big, YAY!! Super awesome.

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  11. Definitely still praying!!!!!

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  12. Prayers from our 6!!

    Rachel
    South Dakota

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  13. I am so happy for you all! There truly is no place like home!!!!

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  14. whew, this made me cry! i'm so, so happy for yall :)

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  15. So happy that she is home - you will continue to be on my heart and in my prayers!

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  16. I am so happy for you all. Big hugs to you all.

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  17. Amanda,
    I cried watching your going home video on FB. My husband cried. I am so happy for you, that you're getting back to {new} normal. I love you, stay strong!

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  18. I have enjoyed your blog for a long time but never commented. I hadn't checked in for a couple months and I was stunned. I've been laying in bed reading and praying. I am so glad you were able to bring Reese home. May God watch over you and uplift you all through this trial.

    -Mandy from Columbus, OH

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  19. Yay!! What a lovely and super awesome early Christmas gift for you all!

    Still praying all stays well.

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  20. I have read your blog for some time, but I've never commented. You have a beautiful family. I am so thrilled that Reese is home. She is in my prayers.

    Melissa

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