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These Sweet Hands and Teaching Body Parts

Submitted by kim on Mon, 10/20/2014 - 20:22 in Nathaniel's Story

Trick or Treat for Nonverbal Children

Submitted by kim on Tue, 10/14/2014 - 13:23 in Nathaniel's Story

I think a lot about how to help Nathaniel understand and engage with the world and how to help the world understand Nathaniel. In this light, Halloween has been troubling me.

How does a child who can not speak and does not eat participate in Halloween?

Nathaniel, The Calculus Factor, and God

Submitted by kim on Thu, 10/09/2014 - 15:22 in Nathaniel's Story

Starting Down a New Path

Submitted by kim on Thu, 10/02/2014 - 12:23 in Nathaniel's Story

Nathaniel was discharged from PICU to home last Friday. We were encouraged to return to our normal respiratory care regiment: three breathing treatments and two airway clearance treatments per day. By Saturday morning, we realized that was not going to provide the support Nathaniel needed. After offering our full arsenal of treatments, oxygen support, and a trip back to emergency, Nathaniel just yesterday settled back into his normal respiratory care without oxygen.

Making Music

Submitted by kim on Wed, 09/24/2014 - 20:05 in Nathaniel's Story

Life With a Crumb Finding Aspirator

Submitted by kim on Mon, 09/22/2014 - 12:59 in Lessons for Mom, Nathaniel's Story

Every crumb on my floor has the potential of ending up in Nathaniel's lungs.

I type that sentence and do not know what else to say. There should be something funny inserted here. But facing the gravity of life with this child, I struggle to keep it light. Twice today he has picked something up off the floor, put it in his mouth, and then had a coughing spell that required immediate suctioning.

Swallow Study Results

Submitted by kim on Wed, 09/17/2014 - 16:02 in Nathaniel's Story

We are home from the swallow study. The waiting over. We have results.

Nathaniel is aspirating. He aspirated thin fluids and thickened fluids. Given the study results, the radiologist and speech pathologist conducting the test were not willing to try food. It can be assumed Nathaniel is also aspirating food. Rich and the boys have asked good questions. Here are some of their questions and the answers.

Did the test explain how he is aspirating?

Swallow Study Tomorrow and Other Hard News

Submitted by kim on Tue, 09/16/2014 - 11:41 in Nathaniel's Story

A Very Full August

Submitted by kim on Mon, 09/08/2014 - 19:40 in Homeschooling, Lessons for Mom, Nathaniel's Story, Parenting

August. Seems it was here one day and gone the next. I will try to hit the highlights here...

First week of August found Nathaniel in same day surgery again for another diagnostic bronchoscopy. His trachea development is stagnant. Still just a pin hole opening through the stenosis and webbing. The doctors were not able to find a cause for aspirating. His trachea did grow in length and we were able to size up from a 3.5 neo tracheotomy tube to a 3.5 pediatric tracheotomy tube. A difference of six millimeters in length.

Celebrating One Year

Submitted by kim on Thu, 07/31/2014 - 18:52 in Nathaniel's Story