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.

I know it has been a long time since I posted on the blog when I can not remember my log in password. I have many topics for blog posts floating around in my head; I haven't made writing a priority this last month.

I am going to ease back into blogging. Nathaniel and I participated in a week long challenge to share photos that represent the hash tag #seemeseemyaac. The goal of the Facebook campaign was to bring awareness of alternative and augmented communication. People participated from all over the world. Pretty cool. Here are our photos and the snippets of information I shared with each photo about our AAC efforts.

I am learning a multitude of ways not to teach and help Nathaniel. I wrote a lengthy blog post in September about starting to memorize bible verses with him. Seven months later, I have learned that approach did not work. Or perhaps it is better stated that in recent months my goals have changed, and so my approach needs to change too. If this topic is new to you, click on the link above to learn where we started.

I made a new AAC friend last month. Dr. Carole Zangari, who blogs at PrACCtical AAC, and I spent a few hours on the phone getting to know each other and discussing her recently published book, Tell Me AAC in the Preschool Classroom.  I have been desperate for direction for Nathaniel's education, and the program developed by Dr. Zangari and Lori Wise seemed promising. I have been studying the material daily since that conversation, and recently watched her webinar given through Saltillo. Dr. Zangari and I had a second phone meeting yesterday morning. At one point in our hour and a half conversation, I had to get up from the table and pace the living room floor; the excitement brewing inside needed a physical release.

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.

During rounds this morning the team discussed how to adjust and increase feeds around respiratory treatments, coughing, and vomiting. I explained what I do at home. The Fellow commented almost under his breath, "That is a lot of work," and immediately I started to sob. In the middle of the hall, in the middle of rounds, in front of a team of professionals and strangers, I lost it. And I could not pull it back together.

I barely could whisper a response between breaths, "Yes, Nathaniel is a lot of work."

The team paused to give me time. All I could do was cry.

I crawled into bed at five thirty-three Monday morning and put my head on Rich's shoulder. It was the first time we had shared the bed that night. "Just coming to bed?" he asked, "How is he?"

"Yes. He's asleep. Thanks for the notes." I responded. Neither of us said more. For a few moments the only noise in the room was the hum of the air compressor for Nathaniel's heated humidity. I drifted into a light sleep, and Rich's deeper breathing resumed.

From under his pillow the alarm on Rich's cellphone went off.  Five forty-five am.  The shoulder I was using as a pillow moved, and then was gone.

"Do you hold him every time he receives a g-tube feed like breastfeeding an infant?" asked my friend, Kelly three months after we brought Nathaniel home.

Her question awakened a maternal instinct I had known five other times, but had not applied to Nathaniel. No, I thought to myself, but was hesitant to admit. Feeding Nathaniel involved a plastic button inserted through a hole into his stomach, a whirling pump hung on an IV pole, and a short tube connecting the two which delivered warmed formula at regular intervals. Feeding Nathaniel was dictated by a doctor; it was supervised and charted by a home health nurse. Feeding Nathaniel was a medical treatment.

At the time, Nathaniel was eleven months old. We had made the decision to feed Nathaniel in a high chair at a family meal as often as his feeding schedule allowed. Other feeds were usually given in his crib. Hours after Kelly's question, I settled into a rocking chair in his room and held him for the duration of his hour and a half g-tube feed; a mother's nurture and intuition was added to Nathaniel's feeding plan.