Warm Weather, Woolies, and Words
Yesterday I visited my own blog to find a link for someone and realized it has been two weeks since I posted last. It takes our family at least a week to recuperate after one of Nathaniel's hospitalizations. Thanksgiving, recuperating, and now preparing for Christmas have all tumbled into each other and filled the empty crevices in each day.
Rich took off a couple hours early one Friday evening so we could go cut down our Christmas tree. With two of our older boys working retail, finding times for this traditional family outing was tricky. We can't remember the year we started going to this tree lot, but we think it has been around twenty-years. It is one of my favorite Christmas moments.
AAC and Healthcare Professionals
PrAACtical AAC, a popular blog for speech therapists working in augmented communication, shared a post this morning that hit me hard. "No matter what the age or type of disability," it said, "almost all AAC learners face the challenge of communicating effectively during encounters with healthcare professionals. People with AAC needs are among those who are considered to be communication vulnerable and do best when there are planned supports in place."
Communication vulnerable.
Belated Birthday Photos And Thanksgiving Wishes
I had hoped to post some photos for Nathaniel's third birthday last week, but a sudden hospitalization reorganized all plans. He had a runny nose and sneezes on Friday, November 21st, and I assumed it was a virus. Nathaniel has had a handful of viruses that come and go like they do for most children. He woke up coughing Friday night and threw up. The night nurse needed to put him on oxygen - often our first indicator that he aspirated.
The Brokenness and Beauty of Silence
Three years ago tonight another woman held Nathaniel warm and secure in her body sheltered from the encroaching world. I don't know when her labor pains started or who drove her to the hospital. I don't know how many needle sticks it took to start her IV or what type of pain reliever she had. I do know that three years ago tomorrow morning, the doctors delivered a baby boy from her womb and she heard no cry.
A Narrow Airway, but a Wide Mercy
The larynx does a number of things for the human body. Its most important role is providing a passageway for breathing. Second and almost equal in importance, the larynx protects. The coordination of nerves, muscles, and cartilage work together to prevent foreign objects, including spit, from entering the lungs. We are all familiar with this process. Something starts to go down "the wrong pipe" and we cough it out. That is your larynx doing its job. Another function of the larynx is to produce sound or our audible voice. A fourth function is to help move food and drink toward our esophagus and stomach. Four things: breathing passageway, protection, sound production, and aid in the eating process. We learned last week that having all four is not an attainable goal for Nathaniel.
What We Need When the News is Hard
I shared the news of Nathaniel aspirating with Rich by sending him the photo of the green gunk on Nathaniel's shirt. I had no words to soften the message. He had only one word back. "Sad."
I left the clinic and got on the elevator. There was a doctor in a white coat already there. Nathaniel burst into tears, started to kick his legs aggressively while turning in the stroller to reach me. This is his often response to seeing anyone in a white coat. Especially moments after an invasive painful test. The doctor moved to the far corner of the elevator away from us. "I am not going to hurt you," he said to Nathaniel. "I won't even look at you." He turned his back to us, his face to the corner, and remained quiet for the ride three floors down. It was what Nathaniel and I needed. It was perceptive and kind on the doctor's part. It was a gift from God. God has continued to meet me moment by moment since yesterday's test.
If fact He prepared me Sunday morning for discouraging news this week.
Post Tonsillectomy Swallow Study Results
I am thankful that a picture is worth a thousand words. It means I do not need to write much; the photo above says it all. A nurse and I held Nathaniel down so a doctor could put a camera up Nathaniel's nose and down his throat while a speech therapist force fed him green dyed apple juice. He coughed green dyed secretions out of his trach tube for an hour afterwards.
He is still aspirating.
Want to High Five About My Progress?
I took Nathaniel for his pre-Cincinnati pediatrician check up this morning. He needs clearance from his primary care doctor prior to every visit. The doctor gave both of us a high five after hearing an update and giving Nathaniel a quick exam. "Congratulations on getting him this far," he said, "I know it has been hard and long, but this is a different kid than I saw six months ago."
I would agree.
Augmented Communication Part 6 - More and More and More Words and a New Talker
Last week, my father asked me how I know if Nathaniel wants to add a new word to his talker. Isn't that just like a grandparent - challenging the middle generation on behalf of the younger - I love it!
Thankfully, I had a recent example of Nathaniel and I negotiating the addition of a new word to share with him. Nathaniel became infatuated with the movie Frozen this month. Despite our encouragement that he let it go, he hasn't. His usual show requests are Curious George, Daniel Tiger, or Cars Movie - all titles he has on his talker. Rather than using his talker to request his normal shows, he repeatedly brought me the DVD case for Frozen.