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Discouraging Decision

Submitted by kim on Tue, 07/29/2014 - 20:42 in Nathaniel's Story

I made a very hard decision today to discontinue all of Nathaniel's oral feeding. He is aspirating. I have know something was wrong for months. I have grown increasingly frustrated with oral feeds which most days produce coughing fits and increased suctioning needs. Often the coughing spells end in vomiting. His occupational therapist was aware of the problems. She spent half her weekly therapy session on feeding. Her solution was that the more he ate, the more he would get over his 'gag' sensitivity. I felt like I was getting no answers to my growing concerns and decided to get a second opinion.

A Friend to Comfort

Submitted by kim on Mon, 07/28/2014 - 13:02 in Nathaniel's Story

Meet Nathaniel's friend Pierre.

A Modified Stroller and a Communication Refresher

Submitted by kim on Tue, 07/22/2014 - 18:40 in Lessons for Mom, Nathaniel's Story

I completely botched a conversation with one of Nathaniel's therapists the other day. She arrived for our therapy session and saw his medical stroller sitting in the living room. She made a comment something like, "Does he use that stroller? All he really needs is a standard stroller." I heard: "Why are you putting him in that - go buy a regular stroller!"

Language Development and Playing Ball

Submitted by kim on Thu, 07/17/2014 - 21:19 in Augmented Communication, Nathaniel's Story

I mentioned in my last blog post that Nathaniel had a number of doctor appointments recently. I am always learning new things about my son when I talk with his doctors. I learn about things that happened medically before he joined our family.  I learn how they anticipate him continuing to grow and change.

Processing Medical Experiences

Submitted by kim on Sun, 07/13/2014 - 22:03 in Nathaniel's Story

I started this blog the first week in July and have been so busy with medical stuff, I have not been able to finish the post. Let's see if I can wrap it up tonight.

Busy Tuesday and a Bit of Communication

Submitted by kim on Wed, 07/09/2014 - 13:03 in Nathaniel's Story

Yesterday was action packed. Nathaniel started the day with occupational therapy before breakfast. We painted! Since Nathaniel started walking he has not had much interest in fine motor activities. He just wants to walk. But he also loves going for walks and therefore loves his Kid Kart stroller. This week I have been adding fine motor activities into his day by using the Kid Kart and tray either before or after our morning walk. Painting went well. He started with the brush and then went to hands; very age appropriate. He had lots of smiles and paint everywhere.

Notice the blue foam around his g-button in the second photo. Nathaniel has grown and the g-button is exactly at the tray level. His g-button has been leaking lately so I am trying to protect it as much as possible. I not sure this system is going to work; he might just need to grow a little more and get his tummy above the tray. Apologies for the slightly blurring photos. Painting was a fast moving activity!

A Boom-Free Fourth

Submitted by kim on Fri, 07/04/2014 - 19:09 in Lessons for Mom, Nathaniel's Story

We woke up July 4th morning with no plans. All week we have been asking each other, "What are we going to do for the Fourth?" No one had an answer. Traditionally, our family enjoys going to a local municipality park that hosts a band and then fireworks. We sit close to both. We knew those plans would not work. 

Although he has not received a formal diagnoses, Nathaniel appears to have some sensory processing difficulties. It has taken him months to get used to congregational singing at church and if we change were we sit, the new acoustics can send him into a panic. There is no way he could handle our annual front row Fourth outing. But a large red, white and blue clad crowd does offer the opportunity for exposure and hopefully desensitizing. We decided to do our crowd event in the morning by attending a parade.

A Year of Knowing Nathaniel

Submitted by kim on Thu, 07/03/2014 - 02:02 in Nathaniel's Story

We met Nathaniel a year ago this morning.

I do not remember now what I knew about tracheotomies before last summer. Probably that they were used as emergency airways. Maybe some faint recollections of ink illustrations in a Red Cross First Aid Manual. Before Nathaniel I did not know that babies received tracheotomies or that a baby could leave a hospital with one or that a baby could breath for a year and a half through a 3.5 mm tube.

A Week of Backpacks and Parks

Submitted by kim on Thu, 06/12/2014 - 15:11 in Character Building, Nathaniel's Story

It has been a week of backpacks and parks here!

Josiah left for National Youth Leadership Training on Sunday. The camp is held annually in southern Missouri. We are thankful for the opportunities our boys have to learn about servant leadership through Boy Scouts.

Back to the Hospital

Submitted by kim on Thu, 05/29/2014 - 22:18 in Nathaniel's Story

If I have learned anything in the last ten months as Nathaniel's mom it is to trust my mother's intuition. I could kick myself for the not doing so in regards to a hunch I had that one of our night nurses was sleeping through her shift. Her inattentiveness Wednesday night landed Nathaniel, Rich and I in the emergency department Thursday morning.