Thursday, September 03, 2015


Psalms 133:1  How good and pleasant it is when God’s people live together in unity!

Seriously, I am grateful today more for what God is doing for my older kids than for what He is doing for Ruby today. (And He is very present in Ruby's moment!) Today is the third day that I have not seen my kids in person. The third day in a row that they have gotten off of the bus with a different family and stayed with that family through dinner at least until Lehr could get them and take them home to bed. Even though these three particular families are close friends who happen to be awesome parents and who also have great kids that Eli and Maddux love, three families in three days is a lot of change-up for the kids. But I swear to you that the kids could not be in better hands. They are loving the glimpse into other families' every day lives and dinner routines, and they are being loved loved loved. And when I get a text or a photo at 2:30 each afternoon, my heart swells. How good it is, indeed!!
This is the part that brings me to tears today; part mourning the everyday moments I'm missing with the big kids, part incredibly grateful for what they are receiving by spending time with others. They are going to mature so much through this process and that's both encouraging and scary at the same time. I received an email from one of Maddux's once/week teachers yesterday:  "...Maddux shared with me some recent health challenges for her baby sister....Maddux was very grown up when she told me. She was appreciative of the wonderful neighbors and most excited about her dinner opportunities with different friends..." I also heard from one of my friends that Maddux was a huge help cleaning up after dinner the other night (and with a smile!). So proud of her.
Today started with a bang for Ruby. Monitors indicated *something* with one of Ruby's two lines just before midnight and that resulted in her having to have a complete dressing change around her port site. So bright lights came on, two nurses and I suited up with gloves and medical masks and we went to work. I held Ruby's mask over her face and her hands while the two nurses worked amazingly fast and gentle to remove the large, very sticky adhesive protection layer covering almost half of Ruby's chest. Then they took off the immediate protection around the port and then cleaned for almost a minute. Then we needed to put fresh protection all back on. Ruby cried a little, but stayed so still and brave. Seriously, so brave. The nurses couldn't stop commenting on how awesome she did (they even brought her a new pair of sunglasses for her rock star bravery). By the time they left it was 12:30 and Ruby was awake. She cuddled with me in the chair though and nodded on and off for about an hour before she was asleep enough for me to put her back in her crib without fear of her tangling in her tubes.
This morning she slept through 4AM vitals and blood draw (one benefit of the port is she doesn't even notice when they pull her blood), and then she woke up at 6:30, cheerful and well rested. She and I played and ate breakfast, then she received some oral meds at 9AM. She was not happy with that; I think she was having a flashback to last night's drama. (Normally, she does quite well with meds through an oral syringe.) Somewhere around 10AM, she fell asleep and rocked a 90-minute deep-sleep nap. I did change Ruby into her own clothes....just because I wanted her to feel more at home. I am struggling to feel not scared about her disrupting the port lines; they definitely make me anxious about her every move.
We enjoyed lunch with Carissa, had a visit from a therapy dog (which Ruby LOVED), and got our port lines wrapped to our back. (Ruby tends to sleep on her stomach and I was getting worried about her playing with the lines in front.) Several visitors today included a family life specialist, a social worker (we may finally get approved for Katie Beckett!), her whole team during rounds, a family liaison, and Daddy.

Good news: Ruby will not have a bone marrow biopsy at Day 14, as originally planned. Her numbers are good enough for us to wait until Day 28 (which *should* be after we go home!). So far, Ruby is tolerating chemo well; she is still eating and playing. She is more fatigued, but only slightly. She is not drinking much at all, but with her still being on IV fluids, they are not concerned about that.
And today ended perfectly for Ruby; her whole family had dinner together in her room! Lehr and Eli's soccer practice was cancelled due to weather, so Lehr picked E & M up and brought them over here just in time for the family dinner on the Aflac floor. (Every Thursday night is a free catered meal for families staying in the hospital.) Ruby was SO excited to see her brother and sister! They ate, rode in the wagon (during which Ruby was beside herself with giggles) and played on the floor. For a moment, everything was just as it ever was.

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