Tuesday, October 13, 2015

Be Awesome

Colossians 3:17  And whatever you do, whether in word or deed, do it all in the name of the Lord Jesus, giving thanks to God the Father through him.

I can honestly say I am feeling like this verse is kinda sorta being lived out right now. (Not sure if that sounds humble or braggadocios; I mean it to be the former, big time.) There are many moments in my days when I find myself just enjoying our time at the hospital. Seriously! I like our room, I've found a rhythm in our days, and the one-on-one time with Ruby can't be beat. So to me that means I'm moving out of my own way a bit and letting Jesus live through me (and letting Him make me realize how much better things are when I do that!)

This round of chemo, the hospital-living part, definitely started out rough for me. When we came in last Wednesday, I definitely had my hands up, ready to fight. I was ready to fight the schedule given to us, I was ready to fight the steady stream of delays given to us, I was ready to fight anyone who changed anything else in MY schedule. That made for a very hard first two days. (Obviously I was thrashing around in the water.)

Then I eased up around Friday night....spending the afternoon with my boy on Saturday and being home for most of the day Sunday definitely helped as well. I've been at the hospital since 4PM on Sunday and I can honestly say I'm not anxiously watching the clock for the next time someone relieves me. It's almost like I'm finally able to breathe through every aspect of this diagnosis, even the 'little' stuff! Seeing Ruby go through so many different medications and transfusions and infusions is nothing short of inspirational for me. I guess (at least for this week) I finally figured out that if she can do it and not let it bother her, the least I can do is stop complaining about all of the things that bother me.

So that verse above, to me, means "be awesome", because God is awesome, and we are made in His image, right? Ruby's got that down...she does it in her sleep.
After her nap, Ruby and I visited Claire for a little bit and then headed to the outdoor playground. This girl climbs up the steps to a TALL platform and then dives, head-first unless I correct her, down a tubed slide. No fear. By the time I make it down the steps, she is standing up and wiping her hands. 

We decided to head down to The Zone for the Halloween party before dinner, and I'm so glad we did because Ruby had a great time AND scored a costume! We talked about Ruby being a butterfly for Halloween, but it's highly unlikely she'll be home to trick-or-treat this year. So at least for today, she got to dress up and participate in some festivities. I picked out a 'bat fairy' costume for her (it was either that or a Disney princess...any of them), but I wasn't sure if she'd leave it on. I pulled the dress over her, put the ears and wings on, and then fit her tiny fingers into the gloves. She LOVED it. Ruby kept the entire thing on (even the ears!) until we got back to her room and I took them off so she could get another round of platelets. (We were called away from the party to come back to the room for platelets, but before the nurse hooked her up, Ruby walked to the nurses' station and did a few spins to model her costume. Of course.) I will get some real photos tomorrow.
The spots in Ruby's mouth are getting slightly smaller, which is a sign the platelets are being received properly. Here is a (bad) picture of some of them from this morning; they were all over the inside of her cheeks (out of view of the camera) and several on her tongue. Given the change already, and the second bag of platelets, I expect by tomorrow morning that they will be barely noticeable.
Finally, during naptime, someone who handles social media for CHOA contacted me to see if it was ok to feature Ruby on the CHOA Facebook page today. Since Ruby is so 'out there' already, of course I said yes. They posted this just after dinner:

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