Nathaniel and I have been lazy all morning. Actually, we've been lazy all week. He was released from the hospital Monday, but it was not until Thursday night that I felt we were on top of his frequent vomiting. Wednesday night was rough. Concerned he was spiraling down toward dehydration again, I messaged our house church (small group at church) and pastors to pray. Slowly over the course of the day, he improved. He felt well enough to join his big brother, Peter, in a hammock outside on Thursday afternoon. Peter will be working in Alaska this summer as a supervisor at a Boy Scout camp. The hammock is newly purchased to take with him. I think the quiet afternoon will be a special memory for both of them.

I came home from the hospital last night and noticed the two trachesotomy tubes sitting on my windowsill.  Both, one from two weeks ago and one from Friday night, are waiting to be cleaned and sterilized. Seeing them reminded me of the first time my younger brother came to visit us after Nathaniel came home. We keep two trachs, one the same size and one smaller sealed in bags after sterilization, near Nathaniel's bed. At the time of Clint's visit, one of the tubes was stored in a bio-hazard bag; it had probably last been sterilized at the hospital. Bio-hazard baggies are what the nurses use even though the item inside is going home intended to be reused. When talking about Nathaniel that night with my brother, I made a dismissive comment about the intensity of his care. "You have a bio-hazard bag hanging in your son's bedroom," Clint said with some strong emotion. "For crying out loud,  this is beyond medically complex. This is life and death."

At our last augmented communication team session, one of the therapists asked me how Nathaniel does with books. "Oh," I thought to myself, "we're doing great here. They will be so impressed!" Out loud I said, "Really well! We read ten to fifteen books a day. We get books from the library. We have set times through out the day when we read. And we use the talker while reading too!" They asked for further explanation on my last point.

I have read to Nathaniel since his first day home. Shared moments of reading between parent and child is foundational to my understanding of child rearing. My mother read to me. My Aunt Beccy kept stacks of books in her car for her children and other young riders. My mother's cousin was an elementary school teacher and gave me most of her classroom library when she retired. I was nineteen. I had children's books before I had children. Through our years of homeschooling, reading books aloud has been a pivotal aspect of our curriculum and our family's day.

Rich and I are professionals at a consistent bedtime routine. I think we crave it as much as the children. It closes our day familiar and predictable. We share responsibilities; we know our roles. Nathaniel knows the schedule too. After bath and g-button care, trach ties, lotion, and pajamas, he is ready for stories. Then a short cuddle on a parent's lap in the rocking chair, and he crawls willingly into bed. Many nights, Rich shares these last moments of the day with Nathaniel, while I use the time to catch up on emails, prepare for the next day, or write. Last night, Nathaniel came into the living room between stories and getting in bed. Something new. He was carrying his talker. He said, "Night Night, Mommy," and offered a hug.

It has been about six months since I offered a review of Nathaniel communication growth and shared what we are working on. Nathaniel's new bedtime routine reminded me that I have much to write about.

I have about an hour. I have been wanting to get an update posted to the blog for weeks and have not taken the time. I am going to take this hour and publish whatever comes at the end of it.

Here goes - ignore spelling and other such errors.

Rich and I left Cincinnati knowing airway surgery would change Nathaniel's life. And ours. We were right. We did not know about all the different ways that would happen. In general, everything about living on the edge of life and death is gone. We no longer mentally ask ourselves the thousand safety checks we used to ask: "Are his hands too close to his trach?" or "Who has eyes on Nathaniel?" or "Did he aspirate when he vomited just now?" Life has been taken down a level in intensity. We change trach ties alone now; Nathaniel's three-year old restlessness with this process and grabby hands at his tube will no longer means a potential oxygen deprivation accident. We drive alone with him. We have left him with his older brothers to run to the doughnut shop on Saturday mornings. He plays free with other children and away from our side on the church playground after services. On Thursday, I was in Houston at the conference, Rich was at work, and Nathaniel was home for eleven hours with a nurse who had worked only one shift prior. Quality of life, getting on with life, enjoying life moments.

Another way that life has changed is that Nathaniel has had more respiratory illnesses in the couple months since surgery than he did in the six months prior. We knew this would happen. The freedom to live life means we are in contact with more people and more viruses. He has jumped from one illness to another; most have stayed very minor, however one lingered long enough that it developed into a secondary tracheitis infection. But he has not been hospitalized. Airway surgery removed aspiration. Without aspiration, less pneumonia. Even with the increased viruses, we are using fewer breathing treatments, and Nathaniel requires less suctioning than prior to airway surgery. 

Nathaniel saw the hand surgeon today. It has been almost a year since surgery to rotate his right thumb and six months since our last check up. The surgeon is very happy with the placement of the thumb and Nathaniel's ability to do the pincher grasp with the right hand now, something he was not able to do prior to surgery. Nathaniel's right hand will probably not be his dominate hand; we expected that. But surgery has created a very useful support hand.

We have been working on hand strength for months in occupational therapy. Nathaniel struggles to pull up his pants or separate pop beads. The right thumb, while in a good position now, lacks normal muscle structure. Surgery included splicing a muscle on the pinky side of the hand and bringing it over to the thumb to increase muscle support. Nathaniel has a curled pinky finger as a result of relocating the muscle.

I was driving home from grocery store the other night and started to sob. A chest heaving, can not catch your breath sort of sob. Nothing had happened that day or during the shopping trip that warranted tears. As I was leaving the store, Rich and I had exchanged texts. He and Peter were finishing up changing Nathaniel's tracheostomy ties and he was putting Nathaniel to bed. "Will you be home to say goodnight?" The last text from Rich that I read before the convulsive gasps gripped my torso like fingers grip a steering wheel when driving in a torrential rain.

We had a very happy little guy at dinner tonight. Nathaniel ate orally. And he loved it.

I had one overriding thought when the team in Cincinnati told me we could start oral feeds - "I want this to be simple." Advocating for someone's safety is hard work. Watchful waiting for three years is stressful. As we find a new routine to life post surgery, we are just beginning to see how much strain our whole family has lived with for a long time. Intense feeding therapy is the last thing I want to start right now.

When Nathaniel discontinued oral feeds, we decided to keep him at the family dinner table. He prayed with us. He listened and participated in our conversations. He received his g-tube feed while we ate. Almost nightly, he would reach for our silverware, plates, and glasses. I broke my heart. Often he ended the meal with someone's fork or spoon in his mouth. We kept his oral stimulation toys and other quiet activities available, but I think holding and pretending to use a utensil, even without food, gave him pleasure and helped him feel like he belonged.

I did something Monday that I have only done once since July 30, 2013. I drove alone with Nathaniel in the van. We went to the park and took a walk. We stopped by Barnes and Noble. We were away from the house for almost two hours.

It felt so good to be out together. Alone. Together.