It is four forty-five in the morning and I am sitting on the floor just inside my bedroom door. It is open. Nathaniel is freshly back to sleep in the living room portion of our hotel suite. The pulse oximeter is delicately balanced on the TV stand so I can see it above the chair pushed hard against the couch. The patient side wire goes one way to Nathaniel's foot and the electrical cord goes to an outlet on the opposite side of the room. Together with other machine cords, room air and oxygen lines, there is a labyrinth of wires that would challenge even CatWoman. The alarm sounds, and I divert my gaze from laptop to machine as I set down the one and move towards the other. Oxygen level: 84%. I silence the alarm. 85% 86% 88% It rises slowly with every flash. Nathaniel's central sleep apnea. 89% 90% 90% 91% I pull a flashlight out of my pocket and check his color. He looks cozy and comfortable, lips pink, chest rising and falling rhythmically. I lightly squeeze a finger. Capillary nail refill is good. 91% 91% 99% That finger squeeze always works. I return to my computer desperate for awake time that is not entangled with hands-on care giving. If you are reading this on Monday morning, you will know I found that time.

We have settled into a routine. Nathaniel's days start way too early. He has been awake and unwilling to return to sleep before five every morning since surgery. This morning he woke at three, but returned to sleep just after four. Most mornings I have tried to get my shower and dressed after three but before Emily goes to sleep; this morning I sent her to bed right away. Nathaniel was awake, sitting up, and wanting me. It is hard to predict how long it will take me to get him back to sleep. Before five in the morning, I attempt to sooth him. After five, I give in and start our day.

First up is a breathing treatment and medications. Some mornings we linger in the cuddle. Son, mom, office chair, and PBS. Then I prepare his breakfast feed, pack it in his little backpack, load the stroller, and we leave the room by seven thirty.

I realized last week that this could easily become two-weeks of hotel waffles and sausage with strangers and the morning news sort of experience. Nothing in that sounds appealing to me. Only easy. I long for easy. But thoughts of the lingering after taste of syrup, grease, and coffee nauseates me before the first bite. Our hotel is near multiple corporations and therefore also near multiple restaurants that appeal to the business employee on the go. I walk a half mile to Panera Bread and get Emily a Bacon, Egg, and Cheese breakfast sandwich to go. Then I walk back towards the hotel to get her a smoothie from Tropical Smoothie. They offer Happy Hour from seven to nine in the morning. Fifty-percent off. I get a Daily Green with protein and no sugar for myself. And a side of Kale and Green Apple Slaw. I head back to hotel, stop by the lobby to pick up hard boiled eggs, and return to our room. Emily's breakfast-to-eat-after-lunch goes in the refrigerator. I sit to eat my eggs, smoothie and slaw. Nathaniel's feed finishes the same time I do. We wrap up our breakfast time, grab a few things, and head out again so the room stays quiet for Emily.

Despite being in a business section of town, I have found a network of sidewalks to get to the park. I am thankful for Toyota, Johnson & Johnson, and other corporations that have green spaces between their buildings and the busy roads. We have gathered rocks, black walnuts in their green casings, Magnolia tree seed pods, and pine cones. I am more comfortable here than on the trails I found last Thursday. If Nathaniel had an emergency, I could give EMS cross street names and landmarks so they could find us quickly.

The park is newly installed and innovative. Probably the most creative feature are the AstroTurf mounds or mini-hills for climbing and sledding. Nathaniel has surprised me each visit with his willingness to explore these spaces, with his core strength, and newly developing agility. Watching him reminded me that I promised a post on some of our occupational therapy tools, but have not written it. I see the benefit of those clearly this week. He can move and carry his body in ways he could not just a few months ago. He is tolerating crowds and sudden noises without letting it dominate his play. He lets me know when he has had enough and is ready to return to the comfort of his stroller.

We try for a Nathaniel (and mommy) nap in the afternoon with moderate success. Some days he has slept in the stroller on the walk home from the park and we do not sleep again. Emily is usually up by two. Our late afternoons have been filled running errands to a few stores, laundry, (The nerve of mommy to put all the blankets in the machine where Nathaniel can see them but can not get them!) or back to the park. If Nathaniel's sleep improves, I hope we can venture to some museums this week for Emily's sake.

Around five, we put Nathaniel back in the stroller with his dinner g-tube feed and walk to find something to eat. The hotel suite has a small kitchen, but the cooking and cleaning up is time consuming and takes us away from Nathaniel's needs. Going out to get a salad or sandwich gets us out of the room and more fresh air - both are needed for our stress levels. We start our evening medical routine after dinner. Changing Nathaniel's trach ties is probably the most dangerous time for an airway accident. Some nights he has fought us. Some nights he takes it like he is on a beach vacation, hence the photo at the top of this post. A two-year-old is as predicable as the wind.

Speaking of which... it is six thirty and Nathaniel is still sleeping. He has woken a few times, but resettles into sleep with me patting his bottom. Team Nathaniel prayers answered. This, even with being awake for an hour at three and cat napping between five and six-thirty, is the best night of sleep he has had in days. Today will be a better day because of it. And because of the snippets of time I have had to write between periods of encouraging continued sleep. Thank you for reading and hanging out for a virtual day with us in Cincinnati. Thank you for your prayers.