All in Parenting
I drove nine hundred and fifty miles across Missouri, Oklahoma, Texas, and New Mexico earlier this month. Rich and I won big at the only lottery we have ever played - the timing of a trip to Philmont High Adventure Scout Ranch. Scout troops put their request for a trek in a literal lottery eighteen months in advance. Josiah and Rich headed west by train with others from our local troop mid-June. Our personal win? Their one hundred mile backpacking trip ended on July third, the day before Andrew would participate in the 95th Maverick Club July Fourth Rodeo in Cimarron, New Mexico. Philmont sits just a few miles outside of Cimarron. Andrew took a full time cowboy position with the Scout Ranch last September. The opportunity to visit Andrew, see the guys come off the trail, and watch the rodeo called me west.
Nathaniel pinched play dough bits off the ball I held out to him. He poked each piece into the Fun Factory press. Diligently and silently, he worked at the task. Once the press was full, he pushed down on the lever. He watched the play dough ooze through the three holes moving blue snakes across the table. For the twenty minutes that he worked, I modeled language on his communication device.
Nathaniel is back to baseline.
He was discharged from Pediatric Intensive Care Unit to home a week ago Thursday. We reduced respiratory support from every four hours, to every six hours, to every eight hours, to every twelve hours. On Tuesday he no long needed oxygen when awake. By Thursday, he no longer needed oxygen when sleeping. Yesterday he was back to baseline. No oxygen requirement. No breathing treatments. No antibiotics. Little to no suctioning needed each day.
But he is far from back to normal. He lost two pounds in February. His arms seem thin when I help him dress. The jeans that were getting tight in January fit again.
He has little energy. The weather was beautiful this week and though we went outside, he would quickly seek a lap or chair to rest. His most playful day, when he plopped down on his tummy in the dirt and played with trucks, was bittersweet. I enjoyed watching him play in the sunshine. I was constantly aware of the proximity of his trach stoma to the soil and bacteria it holds.