Earning her Ice Cream

9am: Waiting for the big test; she's still fasting and doing great. We had the option to wait another 90 minutes and get Versed to help with the trauma of this test, or muscle through getting the NG tube down her nose and strapped to a board for the high volume barium study without it. I described to Audrey the choices, without glossing, and suggested we could get ice cream after, and she shouted "ice cream!!" Here we go, brave girl.

12pm: Well, it hurt like the dickens, but she did the test without sedation. There is no sign of a leak. Off to get this girl some strawberry ice cream! (Right after she catches a few winks.)
So thankful for the wonderful staff at Primary Riverton for making a tough time easier, especially Steph with Child Life who worked hard to distract Audrey from the intense pain. Audrey thought the bubbles holder looked like a strawberry ice cream cone, so she asked very sweetly if she could have some after we finished.

As we were leaving the hospital, Audrey waved and called "Bye! See you tomorrow!" Clearly the toys and people had left an impression.
"No sweetie," I laughed. "We won't be back tomorrow."
"Oh. Next week then!"
"No, my love. These are very nice people but we won't be back next week."
"Why not?"
"Because your test went well."
"Oh. What do you mean?"
"The pictures of your throat look very good. The doctor doesn't need to see you for a while."
"But I like the doctors!"
"..."

Whole Framily

Yesterday was supposed to be Audrey's major surgery in Boston.

Remarkably, I'm still here at home, and instead she'll be tested this Tuesday at Primary to see how much her esophagus is leaking. She's had ups and downs this winter so far but is really doing great. All week I've been feeling an incredible sense of gratitude, a heightened awareness of the good things in my life, like when you've been hungry for a very long time and then sit down to enjoy a simple meal and suddenly it's the best thing you've ever tasted. My eyes are open to a million small joys. Eden working on a coloring book as Audrey directs her to use different colors and exclaims, "It's so beautiful! Brown hair just like mine!" JJ and Aaron giving me random hugs and obediently doing the chores that I ask, the laughter we share over silly inside jokes, their enjoyment of the food I make. Eden teaching Audrey steps from her ballroom dance class. The ambient sounds of the toddlers playing together. Their begging me to read them a story and then bringing me an armful of books. Gideon jumping up and down after leading singing at Family Home Evening and begging for us to sing yet another song, then directing us not just with his arms but with a whole-on vigorous dance to lead us in the music.

Last Saturday, after dinner Justin and I were still sitting at the table talking after everyone had left, and Audrey came and snuggled into my lap and hugged me. Then she wiggled over onto Justin's lap and hugged him. She reached out and touched my fuzzy sweatshirt thoughtfully. I smiled at her and said, "Do you like my soft shirt, Audrey?" She looked directly in my eyes and said, "I like YOU, Mommy. I LOVE you. I love my WHOLE FRAMILY."

Both Justin and I had tears in our eyes and couldn't speak for a few moments. This 3 year old child has an old soul. A beautiful, regal, powerful soul. We are so blessed.

Simple Gifts

This is what pure joy looks like. Right after Pink Blankie came out of the dryer last night. She went from tired and grumpy to singing "Blankie! Blankie!" over and over when I brought it out from the laundry room.

Certain Uncertainties

Just got off the phone with Michelle at Boston Children's. She left a message yesterday asking me to call her back, and for some reason I found it really hard to do so. I knew what she was calling about. Were we canceling surgery on the 23rd for sure? Justin is convinced it is the right choice for now, but I hesitated. I want so badly to be sure that we're not hurting her by waiting, not causing permanent harm to her lungs like Dr Manfredi feared last September when they first found the leak. I've learned to respect the worry in a doctor's eyes. I saw that look in Dr Miner's eyes during NICU rounds at PCH when he was the lone voice counseling against our then-team's plan of substituting a shortage of the usual TPN calcium by giving calcium citrate via peripheral IV back in May 2011, when tiny week-old Audrey was one of the 4 worst injured babies in the PCH NICU by the calcium fiasco. Her hand still bears a deep, ugly scar from the burn that ate away her flesh and took 3 months to heal. We should have listened to our guts and read the signs then, and gone against the easy course. Is this another one of those times; are we being foolish to cancel and think it's OK to wait? Or is Justin in fact protecting her from unnecessary surgery, potentially numerous followup dilations and another extended separation of our family?

So this morning I procrastinated calling Michelle back until she finally called me again. I apologized and tried to explain my hesitation, thanked her for her work to set up these appointments, and finally did cancel. I should feel elated and relieved. Right?

In November Audrey was eating by mouth extremely well. In December, whether due to a series of viruses or other reasons, she stopped eating by mouth almost entirely. Not for lack of wanting. Last week she was virtually 100% dependent on her g tube. And then, it shifted again and she has been steadily eating more and more by mouth until last night she blew me away by jumping up and down with excitement begging for cucumbers. I was very hesitant at first, and carefully gave her the smallest, thinnest slice to nibble. She had one or two brief "stuckies" where she coughed and gagged and worried us, and then amazed us by finishing it and begging for more, eventually eating not one, but 10 slices.

Wow. This girl just refuses to be defined.