7/3/18 Day +62 Spilled Milk

Today, Reese’s doctor Chris surprised her. Her advances in the food arena have been going well, and this is GREAT news! He was pleased and he knows that a soft pretzel is an ambition of Reese’s. A dream. Well, he granted this wish and moved her to the PHASE B diet! She immediately invited her sister over for pretzels, followed by a tea party (with real tea, chamomile!!) This just about made up for the fact that she had her NG tube replaced while she was under anesthesia this morning, getting her 60-day bone marrow aspiration. The NG tube is the nose feeding tube that she despises. Now, you might be wondering why a child who is so motivated to eat needs an NG tube? This is because a slow, constant drip (2 ml an hour) of formula is good for her gut. It has been shown to stimulate faster healing. How can I say no to that? So it’s in, we will see how long it stays.

Reese’s bone marrow aspiration will tell us about her chimerism and mutations, but results are slow to come back. We pray for 100% chimerism and 0.0 mutations!!! This matters!

I remember when a stressful morning involved getting little kids out the door by 8:10am. Inevitably there would be some tears over an outfit, maybe a potty break needed after boots and snow pants were secured in place… let’s just call these problems spilled milk (which also likely happened.)
I’m not trying to discredit my emotions at the time, or anyone’s emotions who is doing their best to raise great, strong-minded kids and still get out the door in the morning. But, today I was thinking, how blessed was I to think these moments were stressful? How fortunate was I that forgetting something at the grocery store, running late to Pilates, a child’s tantrum, or a difficult bedtime routine was the tough part? Put together, looking closely, all of these things meant I was living a life that was pretty damn great. It’s not that I didn’t feel grateful, every minute of the day, because I did. I really did, I am blessed. But, someday, when we are back at our yellow house in Winnetka, and “milk spills”… I hope I remember to smile to myself, and be thankful for the moment. Even if it is a little tough.

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