I have mentioned Nathaniel's airway difficulties in other blog posts.  With our upcoming trip to Cincinnati Children's Hospital Aerodigestive Center, I want to explain his conditions as we understand them today.

Our local medical team has diagnosed Nathaniel with congenital stage 3 subglottic stenosis with a laryngeal web. The subglottic area of the trachea is directly below the vocal cords. Stenosis means narrowing. Staging is rated 1-4; stage 4 is completely closed.

Augmented communication is hard. Nothing about it is easy or normal. 

Take last Saturday morning.

Rich, Joe and Nathaniel were outside working on Josiah's bike. When I walked into the situation, Nathaniel was upset and on the verge of a big melt down tantrum. Rich filled me in that it was regarding a tool that Nathaniel had confiscated as his own, but Josiah needed periodically. I asked where the talker was, hoping to offer everyone another tool to work through the situation. The talker was not outside.

We were chosen as Nathaniel's adoptive family on June 27, 2013. We spent the month of July learning about his care and preparing to transition him to our home. We teased that we had a one month pregnancy, but in reality it was even shorter because we took a previously scheduled vacation for a week mid July.

We needed EVERYTHING. I remember feeling very overwhelmed when Rich and I walked into Babies R Us early that July. Baby-hood had changed a great deal since we had prepared for our last child fourteen years earlier; even greater changes were noted since we had prepared for our first child twenty-three years earlier. When my other children were little, I had fallen in love with soft baby yellow. I searched for yellow sleepers and yellow receiving blankets. I learned quickly that 21st century baby world is genderized pink and blue.

Ben, Nathaniel and I went to Lowe's this week. Nathaniel had his talker in the cart and when the cashier started talking to him, I reached over and used the talker to say HI on his behalf. It is the easiest way to let someone know he is not going to respond verbally. Most often, hearing the talker catches people off guard and I can quickly sense the individual's familiarity and comfort with special needs children. The cashier came alive when she heard the device. She had questions. By the end of our transaction, she had shared that her own son has Down's Syndrome and was given a Speech Generating Device (SGD). He does not use it because he was teased and told it was for babies. She wanted more information. We wrote down the name of the app, name of my website, and the name of Nathaniel's new Facebook page.

I received a phone call last week confirming dates in August that we will return to Ohio. Nathaniel has been accepted as a patient at Cincinnati Children's Hospital Aerodigestive Center. We will be in Cincinnati for a week, August 17-21 for his initial evaluation appointments.

Why Cincinnati Children's?
Short story: It is the world leader in pediatric airway reconstruction. Skip to the bottom of this post for the offer.
Long Story: read on.

I know Nathaniel's private duty nurses and therapists are watching the blog for information how he is doing on the trip. My first Lakeside post was read and shared far more than I expected, but I doubt it gave Nathaniel's people back home the nitty-gritty details they want. Here you go, Team Nathaniel. This one is for you.

Nathaniel's week in four words: He is doing great.

I can walk you past four generations of Lakeside cottages on my father's side of the family and three generations worth on my mother's side. "A Place Like the Whole World Ought to Be" was the slogan I heard repeatedly as a child of my hometown on the shore of Lake Erie. Most people experienced the Lakeside Chautauqua for a week of vacation; I became a year around resident at age eight when my parents divorced. When a child grows up in the place the whole world ought to be like, she thinks differently of the world. Every time I come home I realize a bit deeper how place influences who we are and who we become.

I am super excited to share this brief post. The ideas here have been brewing in my head for a long time. There is something about knowing we are taking Nathaniel on vacation that has me really focusing on emergency preparedness. Here we have home field advantage. Our first responders know us well. His doctors are familiar with his case. Even their partners. A national ranking Children's Hospital, with detailed records of his medical history, is in this city. I am feeling the heaviness of hitting the road and playing a series of away games. But play is what we want to do on vacation and my hope is that by putting some extra precautions in place now, we can relax and enjoy our trip.

Want to take a stab at which of my blog posts is the most popular?

Most of my readers would probably guess it to be a post about Nathaniel. His airway emergency in May had over a thousand views within ten hours. Posts about his hospital stay later that same month were equally visited. The post introducing him on adoption day had seven hundred views the first week.

But the most frequented page on my blog is not about Nathaniel. It is... drum roll....