Wednesday, April 17, 2013

bluebonnets and disney on ice.

lemme do a quick update first :) then this post will be a SLEW of photos from the past few wkends. some of my favorite photos pretty much ever.

so some of you know that reese had an MRI on monday to check, what i thought they said was fluid, but now they are saying blood. anyway, that area is smaller and her tumor seems to be checking out find so we won't have another MRI for 2-3 more months (although, ill be damned if we wait 3 months haha).

last week, reese's port wasnt drawing back blood at all. so yesterday she got a new port put in. i was supposed to be there by 6:10am.

um.

at 6:30am, EJ's alarm went off and holy shit were we late! I called up to admitting, told them what was up, and we got there by about 7:30am. we get checked in, head down to pre-op and i talk to the surgeon. ideally, he wanted to put it in the same spot (belly area) on the other side. but thats where her shunt goes down into. so he ended up having to put it on the top right. she's sore, so its hard to pick her up like we're used to, but she seems to be okay with it.

we went to D6 and started chemo and fluids. last time, we learned that she needed to be on .9% saline, but they, again, put her on .45%. sigh. the day nurse did it right, i think, but reese had not drank her bottle in a while and so when the night nurse came and brought a new bag - i checked it. i went out and was like "heyyyy...." lol so we finally agreed on the .675% (3/4th) saline and her sodiums perked back up - i think the lowest they got were 135 or so, but she stays right around 142-145 so thats quite a drop.  she puked once, pretty big, and gagged a lot, but she seems to be okay today. we checked out at about 12:30pm or so today. so its super nice to already be home :)

#millerpaige #playdate Cheese face lol #reesey #sillygirl I can't even handle these cheese faces from #reesey lol #reesey #gingerfight #selfies Before port surgery ❤ now I'm just waiting to go see her. #reesey #gingerfight #thehospitalsucks Good morning from #reesey #gingerfight #sillygirl #hairschmair

NOW on a photo front ---

these are from disney on ice. a sweet amazing person sent us 6 (omg so close) tickets. the girls were just mesmerized. even reese watched most of it in awe (until she fell asleep haha). we brought our friends and just had the best time. the girls wore their princess dresses and just thought it was so fun. we are so blessed to have people who think about the girls - and care about them enough - to gift us with such wonderful things.  thank you... so much.


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another awesome thing we did this week was go take bluebonnet photos.

if you have ever lived in texas, you know what a huge deal it is to get your photos in the bluebonnets. i've done these with the girls every year and couldn't wait to take them out.

it went alright haha here are some reese outtakes, first (no i didnt get rid of the people in the outtakes) ---


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and now to my favorites. miller didnt last long, as you'll see ;)


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it was wonderful. this week has turned out pretty good. aidan's dance competition photos coming soon ;)

thank you for every prayer and thoughtful message. each one means so much. and God is, as always, listening.

6 comments:

  1. oh sweet bob's face in awe at the princesses *swoon*

    they're all getting so old!

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  2. I love the picture of Aidan and Sawyer holding hands in the bluebonnets! All of the pictures are precious, but that one is especially sweet. =)

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  3. I've commented here once before, to let you know that if I'm any indication, I believe there are many, many people out there who may not say a lot when they visit here but who do come back, quite frequently, to check in on your lovely family. I want to say that I think you are a pretty remarkable person - your courage and your grace. And of course, it goes without saying that your girls are absolutely beautiful. It is wonderful the way that you are making life in your family go on in a way that is precious and normal and celebratory of goodness, in spite of the huge challenges you are facing together. I also wanted to tell you that your darling Reese was one of the reasons why I decided to volunteer this summer at a camp north of Toronto for children who have been living with cancer. I think of her often. I'm so glad to see her smiling face. Wishing you well.

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  4. What shelfelf said spurred me to comment. I happened to find your blog just before Reese was diagnosed. And I agree that you have become a pretty remarkable person through all of this. Your courage keeps you moving forward and allows you to take on the responsibilities of a sick child plus the needs and wants of the rest of your family so you can tend to their sense of comfort and happiness as well. Teaching yourself about Reese's treatments so you are as capable and know as much as the medical staff that is responsible for her care. Your true grace in how you handle issues that keep coming up along the way. And your positive disposition in general, that is endearing to me. You make it sound easy because you have a natural gift of looking for the good (and the humor when you can) within your day. I suspect not every day is easy, that at times you get overwhelmed and wonder if you're handling it all as well as it could be. Rest assured, no one expects you to be supermom. None of us are, so we wouldn't expect any more from you, who happens to have a lot more to deal with than most of us.

    I love to read about what the girls are up to and see their smiling faces. I've fallen in love with Reese and pray for your family before falling asleep at night. You have a lot of people praying for you and EJ, for the girls and for Reese and it looks to me to be working because you are all doing so well!

    Diana

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  5. that last picture is simply heart melting

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  6. I love the bluebonnet pictures!!! They are awesome. I think of all of you often and hope all the prayers we are all saying get all the way down there to texas!! Shine on!

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